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. 

Let the Breast Cancer Battle Begin

Since I last wrote and posted on January 23rd, I have had several different appointments with doctors, some tests, and a procedure. So here is the update:

On January 31st I met my breast surgeon, Dr. Susan Mahany. She told me that my cancer is what is called Triple Negative Breast Cancer, and it is an invasive ductal carcinoma. What does that mean? Well, the invasive ductal carcinoma part is pretty easy. It means that the cancer started in one of my milk ducts, and then has invaded the surrounding tissue. The Triple Negative thing is a little more complex. Basically, researchers have identified certain hormones that fuel breast cancer. Estrogen, progesterone, and human epidermal growth factor receptor 2 (known as HER2) are the three main ones on the list. They can test the cancer cells and see which of these is acting as fuel, if any. If the cancer is feeding on estrogen, it is ER+ cancer, but if not, it's ER- cancer. Same thing for progesterone (PR+ or PR-) and the HER2 (+ or -).  My cancer does not feed on any of the three, so it is ER-, PR- and HER2-, or triple negative.  The first course of treatment will be chemotherapy, but more on that in a minute.

First, I went on Wednesday, February 5th and had an MRI done of my breasts. Not pleasant, in any way. Two different women at Candler hospital, the receptionist in the imaging center and the lady who runs the little coffee shop, both gave me words of encouragement and healing from the Lord, and I now know two sisters in Christ whom I did not previously know. My MRI results showed that the tumors in my breast and lymph node nearly doubled in size in three weeks. Yikes! No wonder they are hurting pretty much constantly.

Then, on Friday, February 7th, I met with my oncologist, Dr. Jennifer Yanucci. She is wonderful. She explained the whole chemo protocol to me. (explained below)

On Monday, February 10th, I went in early in the morning for my pre-op screening, an EKG, and blood work. That all went smoothly. Then on Thursday, February 13th, I underwent surgery to have my port-a-cath placed. It is now healing and will enable me to start chemo this Thursday, February 20th. While I was in recovery I also had an echocardiogram to make sure that my heart is strong and healthy enough to withstand doxorubicin, also known as Adriamycin, a.k.a. The Red Devil. It will be one of two drugs that I get first. Just to keep us all on our toes, each drug has a generic name and then one or more brand names. Here is the protocol:

First, 4 cycles of dose-dense Adriamycin (doxorubicin) and Cytoxan (cyclophosphamide) and a 'cycle' means an infusion every two weeks, with monitoring of  my blood counts and health in between infusions. This will start this Thursday and, if all goes well, end April 2nd.

Then, 12 weeks/cycles of Taxol (paclitaxol) infusions once a week, and Carboplatin (I have only heard one name for this one!) every three weeks during the 12 weeks of Taxol. I don't know if they'll start this whole part of the protocol on April 9th or on April 16th, but if all goes well, I will be done with chemo either the last week of June or the first week of July.

Within the next few weeks, I'll be undergoing genetic testing to see if my cancer is genetically linked to the BRCA1 or BRCA2 genes. If it is, I'll need to undergo a bilateral mastectomy. If it's not, then I'll have to make a decision about whether to have a lumpectomy or a one-side mastectomy or a bilateraly mastectomy. This will be incredibly difficult for me.

So, let the battle begin! I'm gearing up mentally for my first chemo treatment, and praying that, if the Lord wills, I will tolerate it well.

More soon from the frontlines of the war.

So, I found out I have breast cancer...

Today I got the news I have been expecting since I had an ultrasound on my breast last week. I have breast cancer. I don't know anything about treatment yet. I don't know just how much this will turn my life upside down. I'm not afraid, just apprehensive and annoyed at the thought of so much change.

It actually started almost eight weeks ago, when I felt a lump in my left breast. My last mammogram was in December 2018, and it was clear. Fine. No worries. Then, in late November, I felt a lump that had not been there just a few weeks before. I went to my gynecologist on November 25th for my annual checkup. I had been sick with a bad cold for several weeks at that point, coughing and congested, and feeling poorly. My doctor said she thought it was a swollen lymph node. We agreed that I would wait until I was fully recovered and not coughing anymore, and then see if it was still there.

It was.

After Thanksgiving break, things got crazy with the end of my semester, grading papers and tests, and then Christmas and New Year's Eve. The first week of January rolled around, and Lumpie was still there. So on Tuesday, January 14th, I had a diagnostic mammogram and an ultrasound. A diagnostic mammogram is basically a regular mammogram, and then another mammogram with a magnifying lens in the machine and a different sort of "paddle" or "press" thingy that helps them target one area. During the ultrasound I could see Lumpie, and it did not look good. I think that was when I began to think that this was really cancer.

The next day, Wednesday, January 15th, they called me to schedule a biopsy.

The next day, Thursday, January 16th, they called me to schedule an appointment with a surgeon.

Yesterday, Wednesday, January 22nd, I had a biopsy done of Lumpie and of a sketchy-looking lymph node in my armpit.

Today, Thursday, January 23rd, my doctor called me with the news. Both Lumpie and the lymph node are malignant. I don't know what type yet, and I don't know what the next step is beyond going to meet with the surgeon.

Here are some things I do know:

God is good, and He loves me more than I can ever imagine.
He has given me a wonderful husband and three awesome children, as well as a sweet son-in-law and two beautiful granddaughters. They are my biggest fans.
I have incredible parents, siblings, cousins, friends, co-workers, and students. They will all support me and help me through this. Many of them have been through similar things and can speak words of wisdom and encouragement to me.
My heart is full when I consider all of these blessings.

Let the battle begin! More soon from the trenches...

Fighting something off...

Yesterday my husband felt sick all day (stomach issues) and now today both girls and I have been fighting something off.  Not fun.

I'll be back on here tomorrow. Time to get some sleep.