Round 5: I’m sick and tired of being sick and tired (but still looking for the silver linings).

Well, here I am writing this post about my 5th round of chemo while I am getting my 6th infusion at the UCD Comprehensive Cancer Center. I will start off by noting that this 6^th infusion is my last round of chemo. No more Taxotere and Carboplatin! I am NOT sorry to say goodbye to these two drugs as they have kicked my ass over the last 18 weeks. I am so happy to stop with the chemo hopefully forever, but certainly for a while.  I will continue with getting Herceptin and Perjeta (immunotherapy drugs) every three weeks until March 2021, but these drugs are not designed to kill off my fast-growing cells and therefore do not have as terrible of side effects. 

After this 6^th round, I will be going into my double mastectomy and reconstructive surgery on August 5^th.  Yes, I have a date.  Three weeks from today I will be undergoing surgery, which will include removal of the area where the two tumors are located (the one DCIS growth and the one Triple Positive Invasive Tumor) and the removal one or more of my lymph nodes. If all goes well, I will have all that removed along with my two breasts, the reconstruction of two breasts, and – within a week later – the results of the pathology report.  Hopefully that report will tell me that these 6 rounds of chemo have obliterated my cancer and there are no straggler cancer cells left in my body.  If that happens, I will be done with chemo.  If not, I will have to undergo more chemo. I am operating with optimism and refuse to think about another round of chemo until my results come back. If I have learned one lesson from the last few months is that I do not need to worry about something unless it is real. There is no value to worrying about something that is just theoretical.  Life is just too darn short to waste my energy on that. 

So, how was Round 5?  I will not sugar coat it: it sucked.  But I will caveat my characterization of the suck-i-ness of Round 5 by saying that I think it could have been much worse.  In fact, during my visit with my oncology nurse on Tuesday, she said that I looked good for someone who just went through 5 rounds of chemo.  Her comment surprised me.  I did not think that I was looking very good at all.  I noted my surprise to her because I did not feel good, but that I also had no frame of reference to know how I compared with others who are going through chemo.  She noted that she has a lot of perspective given that she sees cancer patients for a living.  From her perspective, I was looking good and should be pleased.  That comment really made my day.  It also gave me pause: If I felt so crappy, how the heck did other patients feel?  It made me feel more thankful for how my body is handling the chemo. 

With that thought, I headed into the Cancer Center on Wednesday feeling pretty damn good.  I will note that my good feeling was extended when I got home and found the front sidewalk and driveway of our house filled with chalk messages of hope, love and positivity from our friends and family. Putting aside the whole cancer thing, I am a very lucky person to have such loving and supportive family and friends.  I will share pictures and let you know how the rest of Round 6 treats me in my next blog post. 

Now, onto Round 5 . . .

Round 5 started off like every other round.  I felt good the day of chemo.  The next two days were pretty good. I could eat and work for most of the day. I still felt weird – like I could feel the chemicals swishing around in my body – and I slept terribly (those steroids really do a number on my sleep pattern), but I could at least function somewhat normally.  Pro Tip in case you need it (and I truly hope you never will): Drink at least 2 liters of water a day, particularly on the first few days after infusion.  This is really important to flush the drugs out of your body and help with the side effects.

Starting on Day 4 the drugs really get their claws into me and I hardly leave my bedroom.  I would note that each round gets harder because the side effects become more pronounced due to cumulative impacts.  So, my nails that were discolored in round 3 and 4 are now starting to lift and separate.  Yes, it appears that I am likely to lose 4-6 of my fingernails.  Ewww. You never realize how much you use your fingernails until you cannot use them.  Now I must wear gloves for washing dishes, preparing food, doing laundry, gardening, watering plants, etc.  Such a pain in the neck.  I also must really work to keep my nails clean because I run a risk of infection. I must soak my nails a couple of times a day with Epsom salts and then apply Neosporin and band aids.  Did I say that this was a pain in the neck?

While the fingernails are annoying and gross and the weird taste and smell issues combined with a funky GI makes eating decidedly un-fun, I think the hardest side effect is the unrelenting FATIGUE.  When I say I am tired, I mean to say that I am FUCKING TIRED. I am tired on a level that I have never known.  Seriously.  I thought that I was tired when I had pneumonia, but this is next level tired.  For several days, I must sit down after I walk upstairs.  About a week after my infusion for round 5, I went outside to water the plants and had to lie down immediately after I walked back into the house.  The kids thought it was funny that mom had to lie down after watering plants.  There I was laying on the futon in my office with my heart racing after only watering plants!  I am not one who lays around once I am up and moving around, but . . . damn . . . either I had to lie down or I was going to fall down.  This lack of stamina kind of wrecked 4^th of July for me.  July 3^rd is Sam’s birthday. Yes, my sweet little girl is now 20 years old!! Well, I wanted to be there for Sam’s birthday.  So, I was up and doing stuff for her birthday all day.  By the end of the day, I was done. I was too tired to even eat birthday cake – which is saying a lot for me because it was an ice cream cake. July 4^th rolled around the next day and I hardly got off the couch because I was so wiped out.  I rallied to watch Chris and Ben do fireworks on our street, but immediately went to bed right after that.  The fatigue this time lasted a full 2 weeks.  And, to be honest, I am still tired going into Round 6.  My oncology nurse said that it could take 3-4 months before I am back to my pre-chemo self.  Like I said, chemo sucks. 

You know what else sucks? This global pandemic. Fighting cancer in the middle of a pandemic has made it even harder in some ways.  I cannot get hugs from or hang out with friends. I cannot go hiking or camping or just generally out and about where there are other people. I cannot sit outside at restaurants or coffee shops.  I cannot attend BBQs or friend gatherings. My family must share this lockdown with me. That means the kids and Chris cannot do many of the same things that I cannot do, which also isolates them from their friends and means they can’t play sports or do volunteer work that involves being around other people.  This just makes me feel guilty for making their lives harder. All in all, the isolation is starting to get to me.  Other than leaving for doctor appointments, one trip to Napa for a social distanced picnic and walks around my neighborhood, I have not left my house since March.  As for vacation . . . forget it. It bums me out because, as I noted above, I feel guilty that my family is stuck in the house with me and this disease and pandemic combo has imposed a lonely lifestyle on me.

You know what makes this pandemic even worse? Reading about and seeing on social media all of the morons who threaten us with their selfish, reckless, and idiotic behavior. I am not going to start in on our President because I would go into a rant that might make my keyboard burst into flames.  So, other than our anti-President, what really pisses me off are the delusional people who refuse to take even the most basic steps to keep themselves and others safe. Seriously?!? Sick cancer patients manage to wear masks for hours during chemotherapy and do not seem to have a hard time breathing, walking around or functioning.  If we can do it, how hard is it to put on a mask when you go to the grocery store or restaurant or coffee shop or anywhere else where there are other people? You must put on shoes and a shirt on to go into a store . . .  that is a requirement, but then you launch into temper tantrums — that would make a 2 year stop and stare — over putting a little piece of cloth over your mouth and nose? And, do not get me going over the screwed-up irony of these same people chanting about how it is “their body, their choice” over wearing a mask.  These are the same people who are probably writing checks to defund women’s health clinics and cheering over the Supreme Court decision that lets businesses provide healthcare that pays for Viagra but not birth control.  Apparently, their defense of “their body” only applies to them and NO ONE ELSE.  But then what they do not seem to comprehend is that their irresponsible decisions affect them and everyone else.  It is their poor decision making – combined with a complete lack of federal leadership combined with dumb decisions by certain states (cough . . . Florida, Arizona, etc.) and local leaders (cough . . . Orange County, etc.) – that has led us back into conditions in which hospitals are overwhelmed and new shutdowns are happening.  THIS AFFECTS ALL OF US and only keeps hammering our already struggling economy and small businesses who only just want to keep going if they are to have any hope of making it! Ok, I need to calm down.  Let me just say that I hope that sanity prevails, and people stay home, social distance, resist the urge to party irresponsibly, and wear their darn masks when they go out into public! 

Turning from what sucks to more positive thoughts: You know what does not suck? All those things I am doing with my family to make life more meaningful.  The last 18 weeks have really given me time to spend with my family and deepen our relationships. Sam has been home since March and we have had time to hang out and enjoy each other’s company.  We have really torn it up in the kitchen.  Above are some of the things we have cooked up during Round 5 (sourdough bread, gluten free zucchini bread and regular zucchini bread, roasted tomato sauce, peach bread and peach ice cream (not pictured)).  Sam is turning out to be quite the cook.  Last weekend, we mastered the fine art of lamination, which is what you need to do to produce anything with flakey pastry.  After a horrific failed first effort – butter leaking out of clumpy dough with liquified sugar – we produced a fantastic dozen Kouign-Amman.  What are Kouign Amman?  They are a little like morning buns, but BETTER.  They originated in the Brittany region of France.  They are fantastic flaky pastries layered with sugar and baked until they turn out as caramelized, sweet, buttery, crunchy, and flaky pillows of dough.  They are so good.  They take all day with four turns of rolling out dough layered with chilled butter and then two turns layered with sugar. Below is a picture of what we achieved.  And, yes, they tasted even better than they looked.  Even more important than turning out great bakes has been the time we have spent working through baking failures and just talking as we cook.  This is time that has been a real gift. 

Spending time with Ben has been a real joy, too.  He is turning out to be such a wonderful human being.  This pandemic and my cancer have been tough on him, but he seems to always have a smile on his face and a hug for me.  In fact, he has been hugging more, which is pretty special if you are familiar with 17-year-old boys . . . hugging their mom is not high on their “to do” list.  Ben and I have enjoyed catching up on TV shows, watching soccer games, playing games, and just hanging out.  I will not lie and say that I have not used this time to bug him about college applications, but we really do just spend time hanging out.  Again, this has been a gift.

And, then there is my mom. Since my dad’s dying five days before Christmas, she has been living with us.  It was not supposed to be a long-term gig, but with the onset of a GLOBAL PANDEMIC, she has been staying with us until it is safe.  She just turned 79 years old and has some health issues, so it is much better for her to be with us.  While I wouldn’t choose the combo of my dad’s death, cancer and a pandemic to create the perfect set of circumstances for an extended stay, the silver lining here has been a chance to spend “day to day” time with my mom for the first time since I was 19 years old.  Now, I can just cruise into the guest house where she is staying and hang out.  We can just talk or watch TV.  When Sam and I bake, she comes into the kitchen and spends time with us, washing dishes and just asking questions about what we are working on. She joins us for dinner every night. This time with her has been another unexpected but special gift. 

Finally, there is Chris. We have been a pair since we were 23 years old – 30 years! I cannot say that being cooped up in the house in the middle of a pandemic while I fight cancer is how we envisioned what we would be doing in our early 50s as we were just on the cusp of being empty-nesters, but that is the world we are living in. We spend our time together playing games with the kids, going on walks, and hanging out in the backyard enjoying the peace and quiet.  We also plan all the things we will be doing once we bust out of our house and I am healthy.  Let’s just say that our destination list is getting long and keeps growing. 

In addition to spending time with the family, I have also decided to make my time at home count for something in terms of our election.  With everything that has happened in the last 3+ years and then in the last few months, I cannot bear the concept of 4 more years of the same.  I love my country.  I consider myself to be very patriotic.  Having been a Political Science major and gone to law school and spent my adult life working around politics and policy, I have been a student of our democracy.  I care deeply about our country and have great pride in America.  With that said, I am not a Pollyanna. I know that our country is not perfect and has a dark history of racism and xenophobia.  Our economic and political structures have not been equal for all despite the rhetoric.  But that does not mean that we cannot be better and do better.  I strongly believe in the principles of democracy, equal rights, and free speech.  I believe that our nation has great vision and principles but struggles to achieve them. We have the ideal of people pulling themselves up by their bootstraps and giving their future generations greater wealth and comfort through entry into the middle class, but we are failing to keep that American Dream going because the people in power have rigged the system so that the middle class is failing and people are struggling to keep their current standard of living. That frustration of a failing middle class has manifested itself in the rise of blaming others, but really failing to tackle the hard and real reasons for this problem.  Trump rode into power blaming immigrants and non-white people, “liberals” and Democrats. I am sick of what has happened to our country over the last 4 years.  Other than the ultra-wealthy, who is really doing better now than 4 years ago? I am sick of the lack of leadership that is driving America into the next Depression, destroying our standing in the world, and driving deep divides among people who should be working together to pull our country out of the social and economic disaster in which we are currently living. Enough is enough.

So, I have signed up for the Biden campaign and am making calls and sending texts (and donating).  I have also joined Flip the West.  I have made phone calls, got Ben making phone calls, and recruited Sam and Ben to do postcards with me.  We knocked out 50 cards Tuesday night and have another 150 to finish up before the end of the month.  It really is not that hard to do.  I am dealing with chemo and working nearly full time and I have found the time to do this election work.  If each one of you reading this blog can do something –even if it is to write a check — to turn the election, we will have an impact. Our country deserves our time and sweat equity.  If we want change, we must make it happen.  Marching is important to raise the issues up, but after you come home from that march, you need to step up and work to make sure that change really happens. That is democracy.  That is what makes our country so awesome.  That is the power of the people. Ok, I am climbing off my soapbox. 

I guess Round 5 was not all that bad.  Sure, I felt crappy . . . and felt crappy longer than previous rounds.  But the end is in sight with my 6^th round and my surgery date set.  Also, these 18 weeks have given me many special moments with my family and with friends (albeit from a distance).  It has expanded my baking skills to allow me to tackle bakes that I normally would not have tried (sourdough, other breads, and pastry) and to perfect macarons.  And, I have found the time to really engage with this election.  Maybe if I was working at my normal pace and wasn’t trapped in my house, I wouldn’t be so focused and able to find the time to do this work, but I am trapped and participating in this election gives me an important sense of purpose. 

So, in keeping with the theme of this blog, cancer and the pandemic have been real life lemons – of epic proportion – but I have found a way to take those lemons and make some lemonade for myself, my family, my friends, and hopefully my country. 

Stay tuned for Round 6 and my surgery . . .