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...

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.

The Privilege of Teaching

I didn't post yesterday because we had Kingdom Builders Homeschool Co-op all day, and then when we got home it was time to cook supper and spend time together as a family. My day today looked like this: get up, eat breakfast, make up a grocery list, go grocery shopping, come home and bring in all the stuff, put it all away, eat lunch, do several loads of laundry, deep clean both bathrooms, sweep and mop the dining room and kitchen, vacuum everywhere else, sweep the front entry and walk, clean up the back patio, bleach-clean our four white plastic patio chairs (they were nasty from sitting around all winter,) re-do the peanut-butter-and-birdseed pine cone that I have hanging outside my kitchen window, (the nuthatches are thrilled!) cook supper, (chicken pot pie and a tossed salad,) and now I'm on here for a few minutes before I have to go direct the troops in the kitchen cleanup, and fold more laundry. Whew! This was a good, productive day. But that isn't what I want to write about today.

At Kingdom Builders Co-op I teach two classes of Spanish: Spanish 1 and Spanish 2. I have ten students in the first and fourteen in the latter. I love teaching them. I have always loved teaching. Even when I was little I liked helping out other students, explaining things to them and enjoying that moment when understanding lit up their faces. From 1989 to 1997 I taught high school English and Spanish, and although it was difficult to juggle having children and working full-time, I always enjoyed my time in the classroom with the students. In 1997 I quit teaching just before having Mary, our second daughter. A few years later I began teaching piano lessons from our home, and since then I have taught piano for all but two years, and I love doing that, but it isn't the same thing. There is something dynamic and energizing for me about classroom teaching with a group of students, and being able to teach one day a week at co-op is a real blessing. This is our fifth year in the co-op, and over the years I've taught Biology, AP British Literature, Expository Writing, Spanish, and Sign Language. It has been lots of fun. It is a privilege to take part in the students' lives.  I pray for my students every day, and have seen the Lord at work in their lives.

I plan to continue teaching at the co-op for at least four more years after this, until Bobby graduates from high school.  After that, who knows?  I still haven't decided what I want to do when I grow up my kids are all grown up.

It Isn't Cancer!

The doctor called me this afternoon and told me that the cells from the biopsy are NOT cancerous!  Praise the Lord!  I'm so grateful for the sense of peace that I had for the past week!  I realize now that I was holding on to some stress about it since when the doctor said it was benign I let out a huge sigh of relief.  He said they will keep an eye on it, see what it does, and do another ultrasound in a year.  Meanwhile, I'll be having a sleep study in a few weeks and then discussing with both my primary care doctor and the ENT the idea of increasing my thyroid medication in order to surpress this nodule.  We'll see.

ENT Visit *UPDATE at the end*

So....I went to the ENT on Monday.  He is going to send me to a sleep center at a local hospital for a full sleep study.  That was the not-so-surprising part of the consultation.  The surprising part was when the nurse practitioner, who did my work-up before I met with the doctor, was palpating my neck area and asked, "Now Alice, when is the last time you had an ultrasound of your thyroid?"  I told her I've never had one done.  She proceeded to ask me a lot of questions about my hypothyroid condition.  Then she told me that I have a "nodule" in my thyroid......yup, a "nodule."  Nice medical-terminology for lump or cyst.  She had the doctor come in and feel it also. He found it right away.  He explained that 95% of thyroid nodules are benign and just need to be watched, while 5% are malignant.  My next step will be to have an ultrasound with a fine needle aspiration (biopsy.)  I love how in the medical community everything has a nice, neat euphemism or acronym:  nodule, FNA.....it enables us to speak about serious things without saying scary things like "lump" or "biopsy."    They also talked to me about the possibility of my thyroid problems actually being Hashimoto's disease, which would explain a lot about why I'm having such a hard time getting my thyroid medicine regulated.

Here is a link to the Google Health page on thyroid nodules.  You'll notice that they say "lump" right away. They also have a link to Hashimoto's if you scroll down the page.

I'm so glad that I know Who is in control of all of this, and that He is the same "Who" who loves me and gave Himself for me, to ransom and redeem me, and who works in me to conform me to His image.  He has taught me to rest in Him and have peace.

UPDATE:  My biopsy is scheduled for next Wednesday 10 a.m.

Update...

David, the little boy I posted about last month, had to have more surgery early last week to remove more nodules of tumor. After only five weeks the ependymoma had begun to re-grow. I heard from his father, Jesse, yesterday, and David will begin his radiation on Monday, July 7. He has to have six weeks of radiation, five days a week. The whole family will be traveling down to Jacksonville, FL, for this treatment. They are experiencing a total disruption of normal life, and all of the terrible emotions that go along with having a child with cancer. Please pray for them as they go through this incredibly difficult time.

Another Reason for Bobby's Cancer

2 Corinthians 1:3-5 reads:

3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, 4 who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 5 For as the sufferings of Christ abound in us, so our consolation also abounds through Christ.

Over the past year our family has seen many reasons for our having to go through something as difficult as Bobby's cancer. We have seen spiritual growth in ourselves and others around us, we have had opportunities to witness, and we have learned to be content in whatever situation God puts us in. (Okay--we're learning to be content...)

Now we have a new reason. Last week the social worker from the oncology clinic, Donna, called us to find out if we would be willing to reach out to another family whose little boy has just been diagnosed with cancer. She really wanted to know if we felt recovered enough to take on something like this, and I told her that we are. So Monday night we went out to eat with another family who are just starting out on the long journey of cancer treatment. I have not sought their permission to use their full names on here, so I'll just use first names.

Jesse and Vicky have three children ages 11, 8, and 4. A few weeks ago their lives were totally normal, with Jesse working as a pastor of a local Southern Baptist church, and Vicky working three night-shifts a week as a nurse at a local hospital. About three weeks ago, their oldest child, David, started to notice that his left foot wasn't feeling right. He was dragging it a little, and didn't feel like he could tell it what to do correctly. He told his parents that he was thinking what his foot should do, and it was not responding with the action. This condition worsened over a few days, and they sought medical help. Within a week they had their answer: David had a brain tumor.

Two weeks ago David had the tumor removed from his brain. The pathology report shows it to be an anaplastic ependymoma (translation: malignant, no-good, low-down, dirty-rotten cancer.) The doctors believe they got it all out during his surgery, but this does not mean that there aren't cancer cells hiding in the surrounding tissues. Because of this possibility, he is now facing eight weeks of radiation treatments. This sweet family's entire lives have been turned upside-down.

As we sat and talked with them Monday night, we realized just how thoroughly God has prepared us to be able to help, comfort, and encourage Jesse and Vicky. Bobby was able to answer a lot of questions for David and encourage him, too. We can share experiences, give advice, give comfort, pray with them, and uphold them during this time. It was nice for them to have somebody saying "We know exactly how you feel." It reminds me of last March when the Botelhos came to visit us in the hospital and we shared an immediate bond. There is the bond of brother/sisterhood in the Lord, and the bond of parents dealing with a child with cancer. We really do know how this family feels. We can now comfort them with the same comfort with which we have been comforted.

As for David, he's doing remarkable well. He is recovering from his tumor resection well, and only has residual weakness on his left side and loss of balance. He is starting physical therapy this week, and is also have a spinal tap to check his cerebro-spinal fluid for cancer cells.

How wonderful for our family to see that God will use us to come alongside this precious family and help them through this time. As we left the restaurant on Monday night, we gathered around David as he sat on a bench just outside the door. We laid hands on him and lifted our prayers for healing to our loving, gracious, merciful Father God. Please join me in praying for healing for David.

P.S. His mom is setting up either a caringbridge or a Care Pages web site for him. I'll post the link as soon as I get it.

I ponder as I wander...

As I go through my daily routine, I have one or two songs that play over and over in my head, usually songs that I have been playing on the piano or that we have sung in church. Last week I was playing through my hymnal, and this song has been in my head ever since:

May the mind of Christ, my Savior,
Live in me from day to day,
By His love and power controlling
All I do and say.

May the Word of God dwell richly
In my heart from hour to hour,
So that all may see I triumph
Only through His power.

May the peace of God my Father
Rule my life in everything,
That I may be calm to comfort
Sick and sorrowing.

May the love of Jesus fill me
As the waters fill the sea;
Him exalting, self abasing,
This is victory.

May I run the race before me,
Strong and brave to face the foe,
Looking only unto Jesus
As I onward go.

May His beauty rest upon me,
As I seek the lost to win,
And may they forget the channel,
Seeing only Him.

Published in 1925 by Kate B. Wilkinson, this hymn was inspired by two of my favorite Scripture passages. The first is Philippians 2:5 "Let this mind be in you which was also in Christ Jesus..." The passage goes on to explain just what that mind of Christ entails. This is perhaps my favorite passage in all of Scripture--verses 5-11 in Philippians 2. The other verses that Wilkinson clearly alludes to are Hebrews 12:1-2 "Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God." I'm pretty sure there are other verses referenced, also, but those are the two main ones.

I love the lyrics to this hymn, as the author asks for the mind of Christ, the word of God, the peace of God, the love of Jesus, and His beauty, to live in, dwell in, rule, fill, and rest upon her. I have been singing these words over and over (in my head) for the past few days. I'm not sure if we are supposed to meditate on things other than Scripture, but I think this song falls within the guidelines of Philippians 4:8 as something that should be thought upon. So I'll continue to keep playing it over and over in my head as "background music."

Are there any songs on your mind these days?

OK, Be Honest: Have You Ever Done This?

I confess that I have done this before. But during everything that our family has been through, and seeing just how much people praying for us helped us, I have not done this. When I tell someone I'm going to pray for them, I write them down in my prayer journal and actually do it. I may not be able to pray for them every single day, but I do lift them up at least weekly. And not in just the "Dear God, help so-and-so, amen" way, but praying for their specific needs. It's important that we share specific prayer needs with one another, not just "please pray for me." I'm not saying we need to pour out our hearts to everybody we meet, but we each have a few trusted friends on whom we can depend. These are the people we should share specifics with, and trust to lift us up to the Father.