Breast Cancer in the Time of COVID-19 Part 5: The Weirdness of it All

NOTE: For the Introduction to this series, with links to Parts 1-4, click HERE.

Now that I've written about how I found out about my breast cancer, how the battle began, the side effects of chemo, teaching online during chemo and COVID-19, my mental and emotional battle, and the support of family and friends, I want to sum it all up with this post about the utter weirdness of it all. It has been the strangest experience of my life, so far. Everything is different than I ever imagined 2020 being, and has been since January. 

It's strange enough to be told you have cancer. It feels surreal. Suddenly everything has changed, and other people are making you appointments for medical imaging, procedures, bloodwork, and chemotherapy. There isn't really any choice in the matter; if you don't have treament, the cancer will grow, and will eventually disfigure and then kill you. Your body goes into an ongoing fight-or-flight mode. At least this is how it was for me, in late January and throughout February into mid-March. Up until that point, I felt like I was handling things pretty well, juggling work and treatment and time with family and friends. But then another major event rolled into the mix.

The COVID-19 virus seemed like something far away back in January, when I was diagnosed. By mid-March, however, it was evident that this was going to affect our lives far more than we had thought. On March 11th it was declared a global pandemic, and as schools headed into Spring Break, we teachers were told that everything would be shutting down for two weeks, or more. Suddenly EVERYTHING was different. 

I knew that with a suppressed immune system I would be having to avoid large crowds and isolating myself somewhat during chemo, but I had no idea that my whole family would have to shelter at home, wearing masks to go do grocery pickup and wiping down the groceries with sanitizing wipes. We had no idea that the pandemic would last over three months, that friends of ours would lose their jobs, that the economy would be so affected, that uncertainty about infection rates, contagiousness, and personal risk would multiply, or that now, in mid-June, we would still not know when it will all be over. The anxiety of having cancer is multiplied exponentially by a health crisis of this magnitude. I'm sure it's the same for anyone with a health condition that makes them more susceptible to a virus, or with children who have underlying health issues. It feels like it affected all the areas of our life that the cancer had not yet touched.

Before the COVID-19 pandemic, I could have still been teaching, seeing friends, going out to eat, meeting with church family, and generally living a normal life except for being ultra-cautious about germs and illness. But with the shelter-in-place guidelines, all of that ceased. In a way, it took a lot of the pressure off me. I could teach from home, so if I didn't feel the greatest, I no longer had to make the decision of whether to go out and teach or call a sub. Dealing with all the side effects of chemo has most likely been easier for me because I haven't had to travel around to various locations to teach, and haven't had any pressure to go out and be social. 

Now that our state has begun opening up, it's still weird, mostly because of all the unknowns. How much longer will we have to be concerned about getting COVID-19? A few months? A year? Forever? How bad would the virus really be? Is it possible we have already all had it, or been exposed to it, and just don't know? Should we wear masks in public, or does that make us not breathe enough oxygen? How do we know what to believe that is written online? There are many things that are uncertain. 

When will our lives ever get back to normal? Or will they not? Will we have a new normal, a different way of doing things based on my having had cancer and our avoidance of COVID-19? These are still unkowns. I tend to concentrate more on the knowns: my family, my friends, the things I have to do each day, and the beauty of nature when I reflect on it. 

Fortunately, one thing has not changed during all of this: God. His presence in our lives has been a constant throughout all of this turmoil and trial. I have had peace and strength that can only come from Him. He is not surprised by all these events, and so the weirdness of it all is mitigated by the knowledge that He has a plan, even though we don't know what it is. Thus, I have had to trust Him and put my future in His hands, as I always have since the day I first began to follow Jesus Christ. My future has always been in His hands, even before I was diagnosed with cancer and before COVID-19 swept across the globe. That makes the "weirdness" seem unimportant, compared to eternal things.

And so, I conclude my official series on having cancer in the time of COVID-19, but I will continue to write about my experiences. After two more rounds of chemo I'll be having an MRI, then surgery, and then radiation. Many more blog posts to come...

Breast Cancer in the Time of COVID-19 Part 4: The Support of Family and Friends

In my last post, Part 3 of this series, I mentioned that when I got my diagnosis I was at lunch with three friends, who immediately prayed for me. That was just the beginning of the incredible amount of support I have received from both family and friends. I don't know how anyone goes through a cancer battle alone, without supportive friends and family members. I have been supported, from the very beginning, in a variety of ways by many, many people. Let me tell you about my social media support, my Amazon Wish List, the Meal Train, the random acts of kindness and gifts, the #WeRunForAlice movement, the constant prayer support, and the cards, letters, texts, and messages from friends. 

The first thing I did after my friends prayed with me was to call my husband, Eric. We then told our children that same day, and both my parents and his parents. My next step was to tell my five siblings and Eric' sister. Once we had told family, I began to tell close friends through phone calls and text messages. Finally, I posted on Facebook. It was one of the hardest things I've ever done. Immediately the responses flooded in, with words of comfort, support, and prayer. Within a day or two, nearly 400 people had commented, and I saw my prayer warriors enjoin the battle by my side, I created a page just for my cancer journey, and a crowd of people signed up to get the updates that way. A few friends, in particular, have already gone through breast cancer, or are still in treatment for it, and they reached out immediately to give me advice and support. My college friend, Holly, snet me a list right away of things that might help my battle be a little easier, things to help along the way. I can't remember if she suggested this, or somebody else did, (I think Holly did,) but somebody told me I should make a Wish List on Amazon, and let people know about it. Holly kicked things off by sending me a few things that she knew would come in handy.

When somebody is diagnosed with cancer, or if one of their loved ones dies, most of us want to help in some way, but it's quite hard to figure out exactly how to help. In my case, there was really nothing anybody could do at first except pray. I hadn't started chemo yet, and I was just trying to keep teaching and handle all the emotional upheaval that comes with a cancer diagnosis. But I took the time to make a Wish List on Amazon, and my daughter Caroline and I published it on Facebook. What happened next really took my breath away. Within a DAY the Wish List items had all been bought! How incredible is that? We're talking about a fairly big list, with a lot of stuff on it: hats and beanies for when I lost my hair, a heating pad, a video camera to make vlogs, slippers, socks, an ice beanie, stomach settling drops, lotions, blankets, hand sanitizer, sanitizing wipes, shirts to wear during chemo, books about breast cancer, acupressure bands to fight nausea, and much more. Within an incredibly short time, they had all been purchased and sent my way. Several people encouraged me to add some more things to the list, so I did. Again, they were bought up quickly. We spent the next couple of weeks making Unboxing Videos for my YouTube channel, showing all the things I had gotten. It was overwhelming. Everyone provided for my needs, which would have cost our family a LOT of money. This was a tangible way they could help.

Next, my daughter set up a Meal Train site so that we could have people volunteer to provide meals twice a week, and Eric's mom would bring a meal another night a week (with leftovers and soup to provide one or two more meals!)  Once again, my frriends and family offered their love and support. Signups for meals, gifts cards to restaurants, and digital gift cards for apps like GrubHub, Seamless, and UberEats came pouring in. My mother-in-law committed to cooking for us every Thursday while I have my chemo treaments. Friends in the area have brought over delicious home-cooked meals. Other friends have sent gift cards or money, once again providing for our family. I love to cook, and usually cook almost every night for our family. During the semesters, when I'm teaching, I do a crockpot meal once or twice a week and cook the other nights. Sometimes we plan to have leftovers ("bonus food!") one night a week. But now, during chemo, I don't have the energy to do this. The amount of standing involved, and the quick moving around the kitchen from task to task, makes me tired and dizzy. Eric, Mary, and Bobby can all cook various things, and are learning to cook more and more during this time. But it's nice to have three days a week taken care of by other people. In fact, nice is not a powerful enough word. It's a major, monumental help to us.

Along with meals, we have had many people show us acts of kindness, randomly, out of the goodness of their hearts. Hand-made lap quilts, hand-sewn little pillows for the shoulder strap on my seatbelt (they protect my port, and once I have surgery they will be soft on my surgical site,) flowers, candy, other gifts of food, hydration powder, meat (grass-fed beef!), custom-made T-shirts, baskets full of fun goodies, encouraging sayings on home decor, random gifts like the running recovery sandals one dear friend just gave me...all of these cheer me up and show me that people truly care. 

Another group of people that has shown me incredible love and support is the local running community. Our Run Family, as we call them, is a wonderful group of people who always encourage and support one another, no matter what happens. At fun runs and races this means cheering everyone else on, no matter their level of running ability. Fast or slow, walker or runner, it doesn't matter. We are all just happy that everyone showed up and is doing something to be healthy. When our Run Family members move away, they are still part of our family. It's like a relative has moved to another state. We stay in touch as well as we can on social media, and when they come back to town for something, it's a family reunion. One of our Run Family members who lives in Virginia now came up with the idea of using the hashtags #IRunForAlice and #WeRunForAlice so that the runners can tag me on social media, and I can enjoy seeing their runs during this time when I cannot go running or go to races. This has been fantastic for me to see! Just before I started treatment, I ran a 10K race, and a whole bunch of the runners, particular the Stroller Strong young women, showed up decked out in pink, with signs and even paper copies of my face/head, to cheer me on in my last race for a while.

They continue to support me like this. Our friend Brittany carries my paper face with her, so that I can "be" there for things, and sometimes they call me on FaceTime so I can be involved, like when a whole group of runners from Savannah went to Atlanta to watch a lady we know (Dawn Grunnagle) run at the Olympic Marathon trials. There I was, in the group picture, with my run family. Look at the right-hand side of the picture, at the phone in my daughter Mary's hand:

We also have a big ultra-runner/trail runner group here in Savannah, and although I'm not either of those things, Eric loves to run the trails and has done several of the runs and races with the group.  In January, Eric and I volunteered  a race they direct, the Daufuskie They have decided to bless our family with the proceeds of one of their races, the Savannah Stone Stairs of Death. The ultra runners like the Rough Runners and other race director companies like Endurance Race Services and Fleet Feet, often use races to fundraise for people and organizations in our community. In fact, just last year several of our local run family members partnered with ERS to raise funds for us to help pay Mary's medical bills from when she had thyroid cancer. It's incredibly humbling to ask for help, and equally humbling when a group of people suddenly asks if they can help you out like this. The running community takes care of its own.

Finally, I receive a constant stream of support from both family and friends in the forms of phone calls, cards, letters, texts, emails, Facebook posts and messages, and sometimes showing up at our door while on a run or walk. These things help more than anybody can ever know. It helps me to maintain contact with all of my friends, even when I'm isolating myself from most of the world because of my compromised immune system. The threat of COVID-19 heightens the level of caution and the acccompanying anxiety as I contemplate possibly becoming infected with it. I have to be extremely careful, so I am, in effect, cut off from most of my aqcuaintances and friends and most normal activities. When people remember to text or call, it means the world to me. 

As I said at the beginning of this post, I don't know how anybody goes through cancer treatment without a virtual battalion of fighters coming alongside them, fighting the battle with them. God has provided me with an amazing group of friends, both here in Savannah and all over the world, and the most wonderful family ever. How can I not be thankful?

 

Breast Cancer in the time of COVID-19 Series Part 1: Side Effects

The introduction to this series is here.

My side effects from Adriamycin (generic name is doxorubicin) and Cytoxan (cyclophosphamide) include nausea, fatigue & dizziness, changes in the color of my nails, intestinal upset, changes in taste, hair loss, and dry eyes and skin. These have continued to various degress under Taxol and Carboplatin. So let's take these one at a time. Please remember that side effects are different for each person. My experience may be completely different from yours, or your friend's or loved one's experience.

Nausea

The nausea during my A/C treaments kicked in pretty hard by Friday night or Saturday morning. I have two prescription anti-emeticss, Zofran (ondansetron) and Compazine (prochlorper) which can each be taken every eight hours, so you can alternate them every four hours to give constant coverage against the nausea. This worked pretty well during my A/C treatments. During my current treatments, with Taxol (paclitaxel) and Carboplatin, the nausea is not as bad when I just have Taxol, but the Carboplatin makes me feel really sick. This past weekend I had not felt sick at all on Saturday, so I didn't take any anti-emetic, and I woke up at 6:15 Sunday morning feeling really nauseated. It was too late to take a pill, and I threw up. A lot. Once the vomiting stopped, I waited about 30 minutes and took a Compazine pill. Zofran has to be dissolved on the tongue, and it tastes weird to me, so I chose the pill I could swallow with a sip of water. At 9:30 I started throwing up again. Again, I waited a while after I stopped puking, about 45 minutes this time, and then took a Zofran. Once I began alternating the two drugs, keeping both in my system, the nausea was under control. But I was exhausted from the vomiting, worried about dehydration, and unable to eat without feeling sick. I spent the day lying on the couch, sleeping and sipping on ginger ale, Powerade, and then Pedialyte that a friend brought over. It was a rough day. By late in the evening I was able to eat and keep down some thin mashed potatoes and a piece of toast with cinnamon sugar on it. Monday I kept alternating the anti-emetics, and was able to eat more normally, but still felt extremely tired.

Fatigue and dizziness

Using the word "fatigue" for how I feel these days just doesn't seem strong enough. The tiredness from chemo is a deep, bone-tired feeling, where you feel like you're carrying around half again of your body weight and your muscles don't respond correctly to your brain's commands. At least mine feels like that. I usually "crash" like this on Saturday afternoon, Sunday, and Monday, so Days 3-5 of each round (the day I get chemo is Day 1.) It makes me feel like all I want to do is sit and watch something, or play a game on the computer or my phone. Along with the fatigue comes dizziness when I stand up too quickly or bend down to pick something up and then rise up again. It's like how you feel when you've been terribly sick and are recovering, trying to regain your strength. Maybe you've never felt that way; I hope you never have. By Tuesday the fatigue lifts considerably and I start to feel more energetic again. But I usually don't feel totally normally physically anymore, not even by Wednesday or Thursday, and then I have more chemo.

Nail changes

One weird thing is that some of my nails have turned dark purple at the base or over most of the nail. It isn't very dark, but it's noticeable. My fingernails have also gotten sort of ripply and ridged. Apparently this is all normal and to be expected.

Intestinal upset

I'll forgo discussing the intestinal upset and just say that it can go two ways: the Immodium way, or the Colace/Miralax way. You can figure that out. 

Changes in taste

The first thing I noticed was that fruit tasted like soap. Then many other foods began to taste metallic or like chemicals. Many foods that I used to like now sound unappetizing to me. For a while, toward the end of my A/C treatments and while I had the sinus infection, I lost my sense of taste entirely, probably because I couldn't smell anything at all, and nothing sounded good to me to eat. (And before you ask, NO, they did not test me for COVID-19. I did not have a fever, sore throat, or deep cough in my lungs. I still wonder, though....) A few friends who are cancer survivors suggested I switch to eating only with plastic utensils, and that has helped tremendously. Since I've been on the two new chemo drugs, my taste buds have revived considerably. I am able to taste food better and enjoy eating again.

Hair loss

I lost most of my hair two weeks after I started chemo, back in March. On Day 13 after Round 1 it started coming out in handfuls. I decided to take control of it, and cut it short, in a pixie cut:

Then Eric helped me shave it into a mohawk:

But it was falling out horribly as I put stuff in it to spike it up, so I only kept the mohawk for about 15 minutes. Then we shaved it all off. I started wearing comfy chemo hats;

At that point, I hadn't started losing any eyebrows or eyelashes. Now that I'm on Taxol and Carboplatin, my scalp hair has begun to re-grow, and my brows and lashes are falling out. My lower lashes are almost totally gone, I have about half of my upper lashes, and my brows are seriously thinned out. I was using a lash serum the whole time on my lashes and brows, but they just can't hang on. I'm having to use an eyebrow pen to fill them in now. 

Dry eyes and skin

Finally, chemo has dried out my skin, even though I try to stay hydrated internally. My feet flake and peel, and my face, hands, and legs are horribly dry. Even my eyes are dry! I had to call my ophthamologist to get recommendations for eye drops, eye gel, and eye ointment that I can use during the day and at night to relieve the dryness. The eye dryness was worse on the A/C protocol, and has abated somewhat during T/C. But it's still there. I'm applying facial moisturizer multiple times a day, and body lotion on my arms and legs several times a day.

Well, there you have it. My side effects.