Lessons learned from a daughter’s breast cancer
The loss of one’s child is a mother’s worst nightmare. I’ve always thought that and I still do. But hearing the words that your 35-year-old daughter has advanced inflammatory breast cancer is a close second in bad dreams coming true.
“Advanced?” “Inflammatory breast cancer?” These words echoed through my head and stabbed at my heart. This could not be. Not my little girl. How is this happening?
Just weeks before leaving my position as Warren town clerk, I was telling my colleague that my daughter’s dog had paw-punched her in the breast and she was having swelling, bleeding and skin discoloration from the injury. Of course, I told my daughter Michelle to get it checked out right away, but we were chalking it up to a simple breast infection as we have no family history. That was in mid-August.
As I shared this information with my co-worker, I said the worst thing that could ever happen to a mother is to lose her child. She agreed.
A couple of weeks passed before Michelle got a doctor’s appointment. Following an exam, an ultrasound and mammogram were immediately scheduled. I had left employment by then and was able to take her for those diagnostic tests. After the ultrasound and mammogram, I knew it was not a good sign when they told her — right then and there — that she needed to have a biopsy done. But, I was hoping to be wrong. Two weeks later, she had the biopsy. The diagnosis came Sept. 27: advanced inflammatory breast cancer that had spread to at least four lymph nodes. The bad news was followed by a bone scan, CAT scan and MRI, to determine if the cancer had spread any further. Thankfully, it had not. Still, the thoughts running through my head were how much further is this cancer spreading while we wait for the results of all these tests and the start of treatment?
The wheels of medicine don’t turn as quickly as one might like, especially when one has no health insurance.
Ironically, Michelle had felt a lump in her breast more than a year before the paw punch. She had an ultrasound done at that time, but someone had dropped the ball. She was never informed that she should have additional testing done. That is one of the more frustrating aspects of this ordeal, but she must maintain positive energy to overcome this demon, cancer.
Michelle has held a great attitude throughout the endless blood tests, surgical preparations for chemotherapy, chemotherapy treatments and several setbacks. I’m learning a lot from my daughter that I never realized before. She is much stronger than I ever could have imagined and she has made me stronger. I have sat with her all day while she has had a myriad of drugs streamed throughout her body and I’ve watched her sleep when the chemo has worn her down. I’m learning patience.
Another tough pill to swallow has been all the trouble trying to get health insurance. When Obamacare became available, it wasn’t an easy process, and with my little girl being all grown up, I cannot directly do the questioning. That’s a difficult role for a concerned mother, let alone a veteran newspaper reporter.
There have been minor delays and changes in treatment plans due to not having health insurance. Then, her first experience with the new Obamacare insurance was that the policy number given to her did not work in the system. So, she did not get her chemotherapy that day, after a long ride to the hospital. There have been other glitches in the first month of coverage, but Michelle is dealing with them. Of course, I wanted to scream! I was frustrated for her having to deal with these types of issues on top of being sick. Michelle just rolled with the punches. Another lesson learned. My little girl is a grown woman who is very resourceful. She’s amazing!
In late October, Michelle’s chemotherapy began. She soon ran into complications from the treatments. She suffered Bell’s palsy, which paralyzed one side of her face. A few weeks later, she developed a blood clot at the end of the port that was surgically implanted in her chest to accept the chemo medicines. So, for nearly two months, she received her treatments intravenously, instead of through the port. The clot required weeks of expensive shots to thin her blood. As a mother, you feel helpless.
Michelle is back to using the port for perhaps a couple more months of weekly treatments. In early March, she meets with the surgeon and a plastic surgeon. She had genetic testing done, which showed that she does not have the BRCAI or BRCAII gene mutations, which would indicate a predisposition for breast cancer. However, because of the type and advanced nature of her breast cancer, she has decided to be proactive and have both breasts and her ovaries removed in hopes there will be no recurrence of the cancer. Radiation may follow the surgery. With her decision, I have learned that my daughter is very courageous.
It’s been a rollercoaster ride through the health care and insurance systems, but the medical personnel at the Maine Center for Cancer Medicine, the Mid Coast Hospital and Parkview Advent Medical Center, all in Brunswick, couldn’t be nicer. All of the facilities offer pleasant and cheerful atmospheres for sure.
Since August, the costs that have accumulated to discover Michelle has breast cancer and to treat it are mind-numbing. And, surgery and radiation are yet to come.
On the bright side, we’ve heard so many positive stories from breast cancer survivors who decades ago endured Stage III and Stage IV diagnoses. So, I am clinging to those tales, praying for my daughter’s survival.
One of the hardest times for me since Michelle’s diagnosis, came three weeks ago when we got the news that her close cousin, John, died. He was only 33. She wanted so much to go to the funeral services, but did not want to be exposed to so many people and the potential of catching a cold or virus.
John’s mother, whom I had not seen in many years, spoke during the service of losing her child. The floodgates of my eyes burst as she talked. I sat there thinking, this could be me standing up there. My heart ached for his mother and his father and for what, God forbid, could be in store for me. Then, the minister said she had an email from Michelle for her cousin, John. As the reverend read Michelle’s tribute, tears rolled down my cheeks and I started to sob. I was surprised to learn that my daughter has such a wonderful, caring way with words.
Michelle’s fight against cancer has also brought to light the many caring friends she has, and how generous and supportive the community at large is when it comes to helping its neighbors in need. An impressive fundraising event was planned for Michelle March 11 at Trackside Station in Rockland, organized and supported by all these fine folks.
One never knows how they are going to react to certain circumstances in life until they happen.
For now, I am surprising myself at how well I am coping. Michelle’s ordeal has brought our family closer and it has taught me that stress, anxiety and worry won’t help Michelle or me. The most important lesson learned has been to place my trust in God’s hands. He is in control, not me.
I pray for Michelle’s return to good health and for all her family, friends and community members who have reached out to help. God bless you.