How Did You Find Out?

How did you find out?
I do frequently get this question, and it is totally a fair one. I would be curious, too, and I do not mind you asking.
Remember in my very first post, I mentioned that I would be talking about breasts? Okay cool you are re-warned.
Or, TL;DR: I found it myself while washing in the shower.

In the lead-up to all of this, I was aware that I have dense, fibrous breast tissue. I also assumed that I had cysts, as my breasts would become very tender and sensitive prior to my period. These are important things to be aware of in terms of checking for breast cancer. Thus, I did try to conduct regular self-checks.

Last June, I found what I thought (hoped) was a cyst. I made a promise to myself that I would keep an eye on it, and I thought it went away-- that is, until late August when I felt what was just unmistakably a hard mass and immediately made an appointment with an obgyn the next day (very grateful that I was able to get in so quickly, since it was a new doc, since we had just moved).

Also, I was so incredibly tired. I had worked three campaigns in the past year, and we moved, so I tried to chalk it up to all of this-- but I knew that this was a depth of tired that I had never before experienced. After Alondra's campaign, I kept saying to people, "I feel like something is wrong." Spoiler: I was right!

One precursor that I did not know was a symptom was that the skin at the tumor site was *incredibly* itchy for an extended period of time. So much so that I told John about it-- it was driving me a little crazy. Turns out that many others with this diagnosis also had that symptom. I am sharing this information so that you know, so that you are aware if this happens to you (God forbid).

The oddest thing was that when I did get my diagnosis, as undesirable as it is, I admit to feeling some relief. I knew that something was wrong. At least now I could do something about it.




From Breast Cancer Charities of America

How Are You? Just Fine, Thanks!

How are you?
There is so much to this question for me-- obviously now, but I have actually always struggled with this greeting.
I don't really know why. I think I have always been a self-reflector (one who self-reflects?), so the question, to me, reads deeper than it should.
I want to tell you of all the assorted ways that I feel, of how I am truly doing. I have learned to embrace this awkwardness about me, but it took a long time to successfully supply the rote and expected response of, "Great, thanks! How are you?"
I do not attribute any sort of callousness to this greeting, though I think there are better ones out there, ones that won't cause people like me (over-thinkers?) to pause, mentally review their life story in its current iteration, and then blather on about how I take the dog, Toby, for walks daily unless it is too cold or possibly rainy, which it has indeed been, and then a barrage of medical updates, also I like when I see this white deer on my walks, oh and I am definitely terrified of catching the flu this season, and I have been watching the show "Riverdale" and it is actually not that bad!, I have had some contract work so that's super cool, oh and also I am rereading A Wrinkle in Time before it hits the theaters... etc. So you get the point, yeah? More odd is that I am not otherwise an over-sharer.
So that was a really long way to get to an update about how I am doing. I am fine, thanks! How are you?

I have two chemo infusions left, scheduled for February 16th and March 7th. This new chemo (adriamycin & cytoxan) is a great deal suckier for me than the previous stuff (taxol & carboplatin). I may not have shared with you already that there is a nickname for adriamycin... the Red Devil. Named so for its color (yep, it really is red) and for the toll it takes on patients. Also because it must be administered very carefully so as not to damage skin or veins-- my nurse actually sits and pushes the red devil in via giant syringe. YEAH. It takes about five minutes total which makes me think of the phrase, "A moment on the lips, a lifetime on the hips," but reimagined as, "A moment in the port, a week on the couch." And a lifetime of no more cancer, right?
Thankfully there are meds to counteract the nausea, which is helpful-- but really what it means for me is major food aversion. Everything sounds disgusting for at least a week. Some advice I received from someone in the Young Survivors Coalition (this is an org for people who have had a breast cancer diagnosis while they were young) was that when the brain and the stomach agree on a food, you eat it. This has resulted in some interesting dinners, such as tater tots (just tater tots, nothing else), just fruit or fruit snacks, just a sweet potato. I have even had some meat, just because it did not repulse me. So we will get through this next month and reconfigure the food situation once more.
For my next infusion, I have called in reinforcements: my mom is coming to visit again!

One more update that I am even less happy to report is that I had to spend a couple nights in the hospital last week for neutropenic fever. LE SIGH. Please do not worry, because it was not something serious. But it could have been, so they keep you for a few days, no matter what. Like cancer jail.
A neutropenic fever means low neutrophils plus a fever. Very low neuts, as they were at .2. My fever was low grade (100.6 at its highest), but they tell you to come in if it is above 100.4. I first called the on-call oncologist, who said to take a Tylenol (you are not supposed to do this unless explicitly told-- they do not want you to mask a fever), go to sleep, and if it spikes again in the night, to come in. It did and we did, at 3:00am (NATCH, because who goes to the ER at a normal hour?). Long story short, they transported me to the hospital, gave me strong antibiotics, and observed the hell out of me. After many a test, they could not find the source of my fever, and really it could just have been my own regular bacteria causing it since my immune system was compromised. My fever went down and stayed down right away, and once my neuts got back up to a safer level (1.4), they let me go. I disliked this entire experience, but was super grateful for John staying the night each night, and for the amazing medical personnel at every step of the way.
Side note: Who are these people with these insane jobs? They work ridiculously long hours and see some horrifying sh&* and I just do not understand it. My EMT works 24 hour shifts! And still volunteers as a volunteer firefighter/EMT on the side! Just... no. But thank you, thank you, thank you, to those who do this work.

Tomorrow I have my first appointment with my plastic surgeon.

Cool story, Hansel.

I asked for a sweet potato, and I got a sweet potato. Thanks, John!

I can relate.

Neutrophils are Working Hard

I have to guess that with all the flu and other stuff going around, my neutrophils are working hard to keep me healthy-- and thus they are depleted. So no chemo today!
Not ideal.
Cannot be helped.
Try again next week.

 

Happy New Year & Other Musings

Happy New Year!
I have not been one for keeping you up to date, I know. Holidays and general laziness. Also, despite being from the North, I just really do not enjoy being cold and thus end up bundled up under blankets with a book and a cat as often as possible. As such, I am quite happy that the next five whole days will be noticeably warmer, and Toby the dog will love me once again as we resume our walks in the woods. Also, if I have not told you yet, or you do not follow me on Instagram, there are gorgeous deer in the nearby woods. I love them. One of them is piebald, which means mostly-white but not albino (not the technical definition, but you can look it up). Very rare! and I consider a positive sign for me. Also, we have come to call her my patronus. Which in my head sounds like the song "My Sharona." Are you with me? lulz

Public Service Announcements
It seems that the flu is really terrible and an epidemic this year so please stay home if you are sick. THANKS
Also if you did not get a flu shot, please do so.
THANKS

What's New
I did finish my first phase of chemo-- all 12 TC or Taxol/Carboplatins are complete. That was a lot of chemo, my friends. Yuck.
I also began Phase 2, which is known as AC or Adriamycin/Cytoxan (sounds delicious!). I will have just 4 total of these infusions, every 3 weeks, so cross your fingers that March 2 is the end of chemo for me. Prior to starting the AC, which I did the week after finishing TC, with no breaks, I had to have another Echocardiogram and ECG. Adriamycin is apparently not always great for heart health so they monitor it pretty closely. Additionally, since I only go every 3 weeks, each time is a potential Pembro infusion. John is convinced that I am getting it, and I am not sure, except for a slight rash on my cheeks (attractive, yeah?) I have gotten the last two times of potential Pembro. All I know is that saline solution does not give me a rash. Chemo is definitely testing my beauty limits, and I praise the Sephora goddesses (monetarily).

Chemo Buddy Features! 
In December, my chemo buddies were: Christine (who I unfortunately never did get to see, due to my low neutrophil count-- and I so appreciate her taking the time off work for me! I was sad to not have chemo that day-- because what is worse than chemo? Not having chemo... and not getting to hang out with your chemo buddy), Megan (featured here), Jessie, Barb, and John.
Jessie also brought me a gorgeous quilt that she MADE HERSELF. As I get older, I realize that more and more of my friends have creative talents, and it shocks me every time. How amazing! How did you even make time for that?!
I have known Jessie since 2004, when we met in Vegas on a post-election sad sack trip with a bunch of Dean friends (although she worked for Edwards... blame Courtney 😉).

Jessie is the best. 

My MIL, Barb, who is amazing, was in town for Christmas, and got to be my final chemo buddy! (John will be chemo buddy for the remaining infusions.) Barb is wonderful, and I am very lucky to have married into this family. 

Best MIL ever. 💗

The loml, at my first AC infusion. 

Gratitude

I also want to thank all of you for every single one of your well-wishes: your cards, care packages, tea, gift cards, a free week of food delivery service!, blankets, books, text/social media messages, phone calls, chemo buddies!, in-person visits (Becky! Kate! Matt!), FaceTime chats, flowers, and the *many* other incredible and thoughtful gifts and your different ways of being there for me during this suboptimal period. You get me through the tough parts, which mostly are just feeling as though this will never end... chemo is drudgery, and it can be discouraging on the vanity front... and I can do anything for another month and a half-- so wish me well with tomorrow's labs (let's go neuts!). 

Actual Great News

Cutting to the chase here, my tumor is gone. (!!!) 

It was (roughly) 4.5cm x 2.8cm. Which is pretty large, yeah? 

So this is remarkable. It is early. Just over two months of Taxol/Carboplatin, and (possibly! we shall never know) immunotherapy. And I still have two of 12 infusions to go! (plus four of the AC... and surgery and radiation.)

I received this incredible news yesterday afternoon at my routine three-month check in appointment with the breast specialist/surgeon, Dr. V. They do not normally do an ultrasound for this appointment, it is mostly to see if there has been any progress, and to begin the surgery discussion. But when they felt nothing where the mass had been, they wheeled the ultrasound machine in for confirmation-- and it is indeed gone! GONE. Dr. V. and all of the staff were visibly excited, gave me hugs, and stated that this is really something to celebrate (I had to directly ask, because at this point I am maybe slow to acknowledge good news). Dr. V. told me that I should go home and open a bottle of wine. Then he saw my maybe confused face and restated, "No, really. You should. This is remarkable!" (Note: John picked up some bubbly on the way home.) 

So what does this mean? Unfortunately it does not mean that I can forgo any of the treatment plan (I know, right?!). I do still for sure have at least two lymph nodes that are inflamed, and we would need more scans to be able to tell if there are still floaty cancer cells (more tests will happen in a couple months). What it does mean is that I am responding well to treatment, and the cancer cells are dying, and also that this is happening very quickly and completely. And there is no longer a cancer mass in my right breast.

If you would like to, please raise a glass of whatever beverage you prefer, and celebrate this news with me-- and in honor of our friendship. 💜

Cheers! 

Featured Chemo Buddy: Megan J. 

Megan and I have been friends since the Dean campaign, when we met in Iowa and then hung out extensively for the rest of the 2004 campaign in Wisconsin, where we occasionally enjoyed a snakebite (Strongbow and Guinness, if you did not know) from Paul's Club on State Street. We are Minnesota girls at heart, though, and we made our way back as soon as we could (granted, I have left and returned several times, perhaps will someday return again? who knows) because we are not cheeseheads.
The years have brought us more campaigns, loves, weddings, half-marathons, J. Crew, yoga, pet-sitting, airport rides, walks around the lakes, birthday parties, tears-- all the stuff of friendship-- and recently she has brought to the world sweet Baby E. (proud doula here!), with whom I got to spend time with this past Saturday (Baby E. was not a Chemo Buddy-- but I did get to dine with her the following day). Thank you for coming to see me, and I hope you come back soon! xoxo

Apparently our voices sound alike? 

I Miss My Hair

I know it is all part of the process, and yeah I am pretty much rolling with this whole thing, but I do have to be honest with you, dear reader... I f&*$ing miss my hair. So yeah. If you find me gazing longingly at yours, no need to make me feel weird about it.

Oh, and also my eyebrows.

Pepin & Me, pre-diagnosis. Adorbs.

YEAH MOTIVATION

Chemo, then Chemo Again, then... No Chemo

Chemo
Okay! So, I had chemo a few weeks ago, and my dear friend Lisa was my chemo buddy AGAIN. That's right, she signed up twice, because that is how she rolls. She's the one who, when I first told her that I have cancer, said, "We are going to get through this. Together." That's pretty great, no? Love her! Thank you, Lisa.

She also cracks me up, and did so when, after picking me up, she said, "I was looking at last week's picture with Chemo Buddy Josh and was like, pink wigs! Way to raise the bar here, Josh!" Ha ha. But seriously this is not a Chemo Buddy competition. 😳

So pretty. #chemochic

I must let you know, chemo is tedious. Not just the infusion, because to me that actually feels a little like taking action and I like it, but having it once a week is just a really boring cycle. If you are not waiting for chemo, or having an infusion, or resting, then-- woo hoo Monday through Thursday feels pretty normal! but you still must avoid super germy people or at least apply antibacterial goop on the regular and assessing your day's activities with energy preservation in mind... I don't mean to complain but I just want to be clear here that this is... tedious. Which is why having Chemo Buddies is really amazing, because it allows me to have some social life woven in between. 

Chemo

After Lisa came my mom and my dad as Chemo Buddies... which was just incredibly special. I loved having them both here, I loved showing them around, showing them what my life is like. It was my dad's first DC trip, and we got to enjoy some monuments, a Smithsonian (Natural History Museum, naturally), and delicious Japanese (Sushi Taro-- I had udon noodles, though, since I cannot have raw fish right now). And then we got to have a very special Thanksgiving courtesy of the Vito's. There was a lot of love and gratitude going around, and it was difficult to bring them to the airport. Their absence was noticeable during the following days. Luckily, the weekend was capped with a Christmas tree and adorable Christmas hugs from our nephew. And egg nog (don't judge, I love that stuff.) 

Yes. I do look like them. 

... and then No Chemo. 

I mean, I know that I said that chemo was tedious, but I did not mean that I don't want it...

This past week, my body decided NOPE. Really, my neutrophils decided nope-- they are depleted, which was extra disappointing since it was a week and a half since my last infusion plus I have been getting the neupogen booster (they were at .820, in case you have been following along). Essentially, my body is fighting off germs so this is the result. I am pretty disappointed, though I know that delays are to be expected. I don't know what else to say except that it sucks, and that's life. (Please note that if you say that to me, it is different... so please do not. :) 

Other than delaying treatment and pushing it all back a week, what it means is that I must be extra careful for a few days while they are low (so this weekend). It is important because if I do get an infection, which is mostly monitored by me taking my temp at least twice a day, and if it is 100.5 or above I have to go to Urgent Care or the ER. I am doing what I can to avoid that. 

It is all fine, and I am feeling mostly fine-- just a little worn out. Possibly a tad frustrated. Thanks to all of the friends and loved ones who have been reaching out and sending happy mental health messages. Hugs!

On the Importance of New Year Cards

John and I have a tradition of sending out New Year cards, a tradition we broke last year when I just could not muster enough will (energy? happy? goodwill? I may sound petty here but I assure you it was not by choice) to go through the process-- plus, I was unemployed, and it was not a financial priority for us.
As we face the end of 2017, I am thinking through the New Years card question yet again. Circumstances have changed, and yet I still wish to send a New Years card. I am in a better headspace, sociopolitically. How that could be, when one is facing cancer and lives during this Administration, I don't really know. I suspect it has to do with a modicum of surrender. I prefer to have more control over my life, absolutely, and I seek it out; cancer has had me on my heels. I knew before, intellectually, but am now learning more wholly that I can only *actually* control so much. Essentially, I can control (for the most part) what I eat, how and when I exercise, whether or not I meditate or take a walk or a relaxing bath. And of course, likely most importantly, I can control how I react.
Circumstances have changed, and yet I still wish to send a New Years card. This is my way of signaling a new start, and I am a big fan of ceremony as a vehicle for delineation of time and space. At every year's end, it has been historically important to me to do this, and this year is no different. Even though I will still be in the midst of my cancer treatment (just starting the last of four chemotherapy infusions! For those counting along with me), this is a way to honor the past year for what it was, to tell it goodbye and that its time has come to an end, and to allow my cells to soak up the opportunity for new beginning. (Especially the cancer cells-- GOODBYE.)
Circumstances have changed, and yet I still wish to send a New Years card to my friends and family. I adore giving gifts, and I am pretty bonkers over buying the perfect gift for the individual. I think I am particularly gifted (pun intended) at it, too. I am not a woman of large means, however, so a pretty card is a great way to satiate this desire. This year, more than any other year since infancy and childhood, I have needed the help of others. I have actually been downright reliant upon others. I want to be able to thank so many people, to honor their role in our lives, to express deep gratitude for how you have all shown up for us during this time. It is just a card-- but hopefully it will properly convey our love and joy, and readiness for a bright future.

In rereading this post, I can see that I have now really built this whole card thing up... so clearly I am in.

Lolz. Suck it, 2017.

January 2018: Reclaiming My Time

After three months of weekly chemo infusions (yes I still have the rest of November and December left shhhhhh) I cannot tell you how overjoyed I was to be handed my January 2018 treatment schedule.

Suck it, 2017.

Chemo is Boring but We Know How to Bring the Party

Hello, friends.
First things first: I did resume chemo last week, after my neutrophils bounced back above 1.0; they were 1.03, which means that while I was successful, I also had to begin the booster shot Neupogen (or Zarxio, for those who like knowing specific brands of cancer-related drugs). This is a "growth factor," which I guess describes the fact that it stimulates the growth of neutrophils, which are found in the bone marrow, which is why one of the most common side effects of using it is bone aches or pain (I have also learned from experience that the muscles get achy as well). While this does not sound fun, it's really just a dull ache akin to growing pains. But minus the growth, although I would not be upset if that happened... I have always hoped to push beyond 5'3." Alas.
I will now receive the booster shot for two days (it could be up to four days, depending on how low the neuts dip) post-chemo infusion, so last weekend I had to go in mid-morning both Saturday and Sunday. Once my insurance okays it, I will be able to self-administer these shots (exciting, right?!) at home, which will save an hour each day in travel, as long as I am willing to stab myself. I can do this, dear reader. I will breathe through it (also, thank you Riely for coaching me via text on this!).

Colds and Such
When I was in elementary school, my mom was taking college courses. One day she brought home an illustration from a biology class that showed the immense amount of germs released per sneeze, and how many germs were on things like doorknobs. I will say that this has really stuck with me, and I am somewhat of a germ-phobe. Imagine that, plus going through chemo and having a challenged immune system... What I am trying to tell you is that I am a lot of fun! I walk around with disinfectant wipes (lemon is a great smell, don't you agree) and anti-bacterial everything. I have even self-quarantined over coughs and sneezes. Thankfully, those enduring living with me respond kindly by getting set up with amoxicillin. Also thankfully, I am getting Zarxio and have a better shot (pun intended) at fending off these germs.

Holiday Prep
This week, in preparation for the thanksgiving holiday, I had my labs today (the booster worked!), and chemo tomorrow with Lisa returning as my chemo buddy. Next week, labs will be moved to Tuesday, and chemo to Wednesday, with-- wait for it-- my mom AND my dad as chemo buddies! This is the part where you fall out of your chair because my parents have been divorced since I was two years old. How freaking amazing is that?! They are traveling here to be with me for the holiday. It is incredible, super sweet, and I will be honest when I say I was a little surprised (they were considering just surprising me by having my dad arrive without prior knowledge... thank you for rethinking that!). It isn't that they do not get along-- thankfully, they do-- it's just really touching. I am really looking forward to showing my dad around-- he has never been to DC!
Also, so much gratitude and love to Kelley and David for opening their home to my family for the holiday. You are incredible people.

Chemo Buddy Feature: Josh
Last week's chemo buddy was my friend Josh. I frequently call him Joshy, or pumpkin, but I have known him for more than a decade, so I get to do that. Joshy and I met when we moved into a group house on Euclid St. NW in 2006; I remember when he first walked up to the house and shooed the birds away, emphatically stating, "I hate birds. Ugh." Even though I do not hate birds, I do love when people have strong feelings about everyday things. It was the start of a beautiful friendship, even though the whole group-house thing really imploded.
Josh signed up as chemo buddy and immediately purchased these amazing pink wigs for the occasion. I will be frank, chemo is boring (this whole chemo regimen is pure tedium), but this was super fun, especially when paired with dance party music. Love you, pumpkin!

Don't worry, the pink wig will most certainly make another appearance!

No Camp Chemo Today

I want to start by reassuring you, lest you feel disappointed for/with me, that this is all part of the treatment process. To have a delay in chemo is okay and often expected. For those who enjoy the specifics, my neutrophil level was .800 (must be 1.00 to proceed with chemo. Last week was 1.20).
I have been referencing my neutrophils for weeks, so you may already know that I would necessarily need to hold off on a week of chemo once they fell. This is the week that has happened, and while no doctor or medical professional has outright told me how amazing I am for having held off nearly six weeks without this happening, dear reader, I read between the lines (heh) and assume that is why-- I am amazing. It has been a great sign that I came into this experience with a healthy amount of white blood cell levels that withstood chemotherapy (and again, this is expected to happen no matter what) for quite awhile. I am a healthy sick person!
I have also mentioned that I was told that when this happens, it is time for the booster shot, so I was surprised yesterday when I got the call from Oncologist F.'s office to say that she would like to wait a week, do my labs, and see if I have rebounded. I suspect that they think a week off for me will indeed cause the neuts to bounce back. If not, I was told they may hold off again another week, rather than introducing the booster shot. Or, they might choose to proceed with chemo, but at a lower dosage. It depends on what Onc F. thinks is best at the time, and I have an office visit with her already on my schedule for next Thursday. For what it's worth, I stated that I would "not be keen" on delaying my treatment TWO weeks. The kind nurse on the line said something to the effect of: we aren't either, but we are also not keen on pumping you full of unnecessary drugs. FAIR.
So today I have the day off. How will I enjoy it?

I will drink all the coffee. (Actually just this one cup.)

I will enjoy this amazing cup of coffee. While I am not prohibited entirely from drinking delicious coffee (if you know me you know I love coffee, and I especially love a really good latte, particularly those you might find at Dogwood or Rustica in Minnesota), I am not supposed to drink it 48 hours before an infusion, the day of an infusion, and for 48 hours afterwards, which when you are receiving weekly infusions is pretty much the whole week. Also it dehydrates, and I have a pretty strong need to do the opposite at all times. 

Chemo Buddy Feature: Megan P.

This weekend my good friend Megan P. is here from Minnesota to be my Chemo Buddy, so I do feel some disappointment that she will miss the experience of sitting next to me during an infusion (aka my weekly Benadryl high-and-then-slump) and being bloated from the steroids and chemo. I am sure we will find plenty of other things to do, and that we will certainly get our fair share of cancer talk in; I am mostly excited to have her see where we are living, and to just catch up generally. The fact that we have massages scheduled for tomorrow is pretty fabulous as well. 

Megan and I have been friends since our undergraduate days at the University of Minnesota, Morris, which if you are not aware is aka the Harvard of the midwest, the "smart" school of the four U of MNs, etc. (you can punch me in the face later). It is a small public liberal art school in the middle of corn fields where you can oft find budding liberal activists. Megan is and always was a leader, and I got to know her from the Women's Resource Center (the women's activist group on campus). After college, we worked together for a while at an abortion clinic as peer educators, we worked on campaigns, and there were years where I was a de facto third roommate/couch crasher at Al's and her apartment in St. Paul. I repaid some of that debt by putting her up in D.C. when I lived here the first time. Together we have enjoyed countless dinners, wine, the Klituation dance party, and the highs and lows of our love lives and careers (we were together on election night 2004 AND 2016...). She is now the executive director of an amazing nonprofit called Gender Justice, and I need to get dressed now so I can pick her up from the Metro station. 💕

Update: Here she is, and we took a really nice fall walk today!