BRCA Genes and Chemo
Earlier this month, we met with a genetic counselor, and I had blood drawn to test for the BRCA1 and BRCA2 gene mutations.
The test came back positive for a “deleterious” (harmful) BRCA2 gene mutation. The BRCA2 gene mutation is inherited and puts one at a greater risk for certain cancers. Interestingly enough, about 0.2% of the population carries a BRCA1 or BRCA2 gene mutation. (source)
Since we found out about the gene mutation and some other aspects of my cancer, the doctors that we have been consulting, both here at Northwestern and in Atlanta, have advised a more aggressive course of treatment. Ultimately, God has impressed on our hearts what He would have us do next. I will start chemotherapy at Northwestern next week (March 8).
The doctors have also mentioned future treatments that don’t sound too exciting, but we will seek the Lord for His direction each step of the way. Dan and I have certainly been learning some important lessons along the way. In many ways, this trial seems harder on Dan than anyone else. He is quite overwhelmed with the thought of chemo but is now convinced, as I have been, that this is the next step to take. Please remember to pray for him when you pray for me. Numerous times we have sensed God moving in response to the prayers of His people. Thank you for praying, and to God be the glory!
Throughout the chemo, I’ll be working closely with my doctor to receive treatments to support my immune system. Although these treatments are not covered by insurance, I believe they are vital for helping the body recover from the toxic chemotherapy. So, again we look to Jehovah-Jireh for His provision.
Even though six months of this cancer journey is behind us, I have no doubt the next few months will be most challenging. However, Christ’s words in Matthew 8:26, “Why are ye fearful, O ye of little faith?” remind me to be full of faith rather than fear. And His actions that followed--rebuking the winds and creating a calm--demonstrate His great power.
“What manner of man is this, that even the winds and the sea obey him!” the disciples observed. Their awe was not primarily on the action but on the One Who performed it. He is the Lord and Savior Jesus Christ, the Creator and Calmer of our storms!
I had another doctor's visit yesterday and am waiting for two more test results to come back that could affect treatment decisions.
Just the other day, I came across this poem by J. Danson Smith in Streams in the Desert. A great reminder to be still before our Heavenly Father.
Sit still, my children! Just sit calmly still!
Nor deem these days--these waiting days--as ill!
The One who loves you best, who plans your way,
Has not forgotten your great need today!
And, if He waits, it's sure He waits to prove
To you, His tender child, His heart's deep love.
Sit still, my children! Just sit calmly still!
You greatly long to know your dear Lord's will!
While anxious thoughts would almost steal their way
Corroding within, because of His delay--
Persuade yourself in simple faith to rest
That He, who knows and loves, will do the best.
Sit still, my children! Just sit calmly still!
Nor move one step, not even one, until
His way has opened. Then, ah, then how sweet!
How glad your heart, and then how swift your feet,
Your inner being then, ah then, how strong!
And waiting days not counted then too long.
Sit still, my daughter! Just sit calmly still!
What higher service could you for Him fill?
It's hard! ah yes! But choicest things must cost!
For lack of losing all how much is lost!
It's hard, it's true! But then--He gives you grace
To count the hardest spot on the sweetest place.
Any questions you have that you'd like me to cover on here, feel free to send me a message or leave a comment.
For those of you who’ve been looking for an update, thank you for your patience. The surgery last Monday (Jan. 31) went smoothly. I received the pathology report yesterday. The tumor was 1 cm, grade 3, ER and PR positive, and, strangely enough, HER2 negative. It’s considered a local recurrence, and they were able to obtain clear margins. Although the surgery was more painful than expected, I appreciated the pain meds to get me through the first day or two.
I also had an MRI last Thursday. It confirmed the questionable spot (in the pelvic area) that showed up on the PET scan to be a cyst.
The last couple weeks have held numerous appointments, and going to Northwestern (downtown Chicago) seems to turn into an all-day affair, especially when trying to combine tests with doctor’s visits. The children don’t always “appreciate” my being gone, but it is sweet to hear Matthew pray for “mommy’s cancer to be all gone.” At the beginning of this ordeal, when I’d return from a doctor’s appointment, he would ask, “Mommy, is your cancer all gone now?”
Opportunities have been plentiful to explain to the children that God allowed this cancer, and He is the Great Physician. I would appreciate your prayers for Matthew and Joanna as sometimes their lives are a bit topsy-turvy with appointments, tests, and treatments.
We would also appreciate your prayers for some important decisions we must make these next few days. I’m thankful for the promise that jumped off the page yesterday in my Bible reading: “Call unto me, and I will answer thee, and shew thee great and mighty things which thou knowest not” (Jeremiah 33:3). Sometimes all we can do is call upon God, then simply be still and wait for Him to show us His great and mighty ways.
Thank you for praying for me. Since my last update, I have seen the Lord open up doors, impart wisdom, provide for needs, and calm me with His peace. When the findings of the last PET scan were shared with me, so many thoughts and questions filled my mind.
At first glance, it appeared that the cancer had spread, and it’s amazing how your life can flash before you. When I pondered the possibility of my cancer being stage 4, it was a bit overwhelming. Honestly, the most sobering thoughts were thinking of my children growing up without their mother to love and care for them. But God’s Word reminds me that the Creator of the universe is in complete control, and I can rest in Him. (In case you missed this update, further testing on that area seemed to indicate it was benign.)
Pathology reports from the surgeries in September indicated that the cancer was all removed, but a lump was found near the original tumor site a couple months after surgery. This showed up on the PET scan in January, and the oncologists and surgeons I’ve seen have all recommended that it be removed.
I was waiting to schedule the surgery until after my appointment with a surgeon at Northwestern. The surgeon there agreed with the other doctors regarding the procedure so then the question came of which surgeon to choose. The Lord clearly directed as I sat down to make some phone calls this week.
I felt led to pursue the surgeon I saw at Northwestern, and when I reached the scheduling nurse, she informed me that Dr. Khan was booked until February 10. She said she would make some phone calls and get back to me. When the phone rang a few minutes later, she informed me of an opening less than a week away: this coming Monday, January 31. It was reassuring to see the Lord work out those details!
I would appreciate your prayers for wisdom for Dr. Khan and the team present during my surgery. Please pray for God to guide their hands and for the cancer to be completely removed. God is able!
This morning I was encouraged by Exodus 13:17-18 where God said that He did not choose the nearest way for the children of Israel. Instead, He led them by the Red Sea, a journey that would take much longer. In our days of GPS-guided travel, we might be irritated by such an out-of-the-way route to our destination. However, God’s way proved to be the best way for the Israelites. He miraculously parted the Red Sea and destroyed the enemy. How reassuring it is to rest in the God who is still in control of the universe! He is the One whose ways are always best.
Roller Coaster Week
This has certainly been a week with lots of ups and downs! Saturday, I reviewed the PET scan results with one of my doctors. We had already been suspicious of a 1 cm tumor that was found about seven weeks after surgery. As expected, this spot did show up on the PET scan, and the oncologist wants it removed as soon as possible. That should be a minor surgery.
The delay and scare came when a 2 cm spot was found in the pelvic area. The metabolic rate was suspiciously high, and one of my doctors was pretty confident it was cancer. However, my oncologist ordered further tests, and just a couple hours ago I was able to speak to him about the results. The suspicious area appears to be cystic and needs to be watched closely. This news was certainly a relief!
Further, I’ll be heading to Northwestern next week for a second opinion on the latest events. They’ve asked for all my records ahead of time, including imaging from all tests and pathology slides from surgery. Their team will thoroughly review everything, including these most recent tests. It will be most helpful to have a second set of trained eyes examining my case.
An area of concern the last couple months has been with one of the tumor markers in my blood work. Normal range is between 0 and 9. Mine was 18 a few weeks after surgery then 24 a couple weeks later. A week or so after treatments finished in Georgia, it went down to 9.9--almost in normal range! We were relieved to get that news this week (there had been a delay in getting the results from the lab to the doctor). God knew we needed some good news after the initial scare from the PET scan results. And we know His timing is perfect.
Last night, I heard a preacher on the radio summarize Philippians 4:6 with these phrases: Worry about nothing; pray about everything; and be thankful for anything. Certainly excellent reminders for us as we travel the unique paths God has chosen for our lives!
It’s been absolutely wonderful to be back at home with the family! We had a special Christmas together--with my family in Wisconsin and then back in Illinois to celebrate with Dan’s family. With the intense daily treatments aside for a few weeks, I’m doing my best to get back into the daily routine with the family.
A PET/CT scan is scheduled for Thursday, January 6, and we are praying for good news. I am scheduled to return to Atlanta at the end of January for two weeks of treatment. However, this could change depending on the results of the PET scan and the blood work between now and then.
It seems we are continually faced with decisions that need to be made. Your prayers are appreciated for wisdom each step of the way.
As we were driving back to Illinois Christmas night, I was blessed by the words of the hymn “Thy Way, Not Mine, O Lord,” sung by David Parker. The words written by Horatius Bonar in 1857 still carry great depth of meaning.
Thy way, not mine, O Lord, however dark it be;
Lead me by Thine own hand, choose out the path for me.
Smooth let it be or rough, it will be still the best;
Winding or straight, it leads right onward to Thy rest.
I dare not choose my lot; I would not, if I might;
Choose Thou for me, my God, so I shall walk aright.
Take Thou my cup, and it with joy or sorrow fill,
As best to Thee may seem; choose Thou my good and ill.
Choose Thou for me my friends, my sickness or my health;
Choose Thou my cares for me, my poverty or wealth.
Not mine, not mine the choice in things both great or small;
Be Thou my Guide, my Strength, my Wisdom, and my All.
Isn’t it encouraging that God’s choices for us are far better than any choices we could ever make? And for all eternity, His choices will always be the best!
Changing Circumstances but an Unchanging God
To get everyone up to date, here's a summary of what's been happening the last few months...
On August 30, 2010, I was diagnosed with breast cancer. For any person at any age, the “C word” is a shocker, and for me at age 34, it was no different! With two small children (Matthew age 3 and Joanna age 2) and a husband who recently stepped out to start a business to meet our family’s needs, this diagnosis has been life changing.
September was full of doctor’s appointments, two major surgeries, and further understanding of the nature of the cancer I am now facing. The cancer escaped to the lymph nodes, and I was told my cancer was stage IIB. The tumor markers showed this cancer to be ER+, PR+, and HER-2+. As more than one doctor put it, “This cancer has everything it needs for aggressive growth.”
Although some blood tests after surgery seemed to indicate things were fine and the PET scan looked pretty good, my doctors and oncologists felt we needed to treat this aggressive cancer aggressively.
With surgery completed, we were faced with treatment decisions. After much prayer and numerous consultations with doctors, we found a clinic in Atlanta that specialized in treating breast cancer using an integrative approach. At this clinic, I could get a specialized chemo treatment as well as intense immune system support. My initial six-week stay there lasted from November 8 to December 17.
Over the next year, we plan to work with these doctors as well as my oncologist in Illinois. I will need to return to Atlanta several times over the next year for maintenance treatments and possibly more intense treatments, depending on the blood work and scan results.
Treatments at the clinic cost around $2,500 per week. At other comparable clinics around the country, these treatments usually average $5,000-7,000 per week. As you could imagine, these costs are beyond our own means. However, we have already seen God miraculously provide, and we look to Him for His continued provision.
We are thankful that God has led us to a clinic where the head doctor is a believer in Jesus Christ as Savior and is unashamed not only to speak of Him to His patients but also pray openly in His name with his patients.
Your prayers for successful eradication of cancer are most appreciated. If the Lord would lay it on your heart to help with our medical expenses, we would be most grateful. Our friends at Herring Consulting have graciously designed and hosted our website and made it possible for people to donate online (see link at top left of page). For those interested in making a tax-deductible contribution, you can contribute here and designate your gift for Melissa Huizinga.