~ Romans 13:11
Before I begin my article this week, I would like to thank everyone who takes the time to read my stories in The Prairie Post. In the good times and the bad times of my life, this column has been such a therapeutic outlet for me. And a big thanks to Joann Kahnt for making it all possible.
First of all, I want to share our latest baby news! On June 7th at 5:37 p.m., our son Josh and his wife Lisa had a beautiful 8 pound baby girl named Katelyn Seraphina. We feel so blessed to have two grandsons and two granddaughters. As Asher told his Mommy, “Now it’s equal!”
I had the privilege of being in the delivery room (along with Lisa’s mom) when Katelyn was born. Lisa did an amazing job going through eleven hours of labor – all natural! Shortly after Katelyn’s birth, however, we knew that there were problems, and the doctors and nurses asked the grandparents to leave the room. After waiting in the hallway for what seemed like an eternity, Josh came to get us. We soon learned that our new little granddaughter has Down Syndrome. Of course it came as quite a shock to everyone, and there have been many tears shed, but with God’s amazing grace we have accepted the news and are anxious to surround little Katelyn with all the love and nurturing she will need to thrive in this life and reach her highest potential. We fully expect that this one special little girl will add a new dimension to our lives and bring us unimaginable joy. In fact, she already has. Grandpa Keen thinks that she will surprise us all. “We’re going to be an audience to a miracle,” he said.
Mommy Lisa and Baby Katelyn
Daddy Josh and Katelyn SeraphinaIt goes without saying that I’ll be writing more about little Katelyn in future columns, but for now I’ll continue where I left off last week when Josh had finally convinced me of the need to have the reexcision done after the lumpectomy. Yes, it was time to face reality, but I still felt terrible about the idea of having to go through surgery all over again. It just seemed like I was in a hole and I was never going to work my way out. So that night while I was lying in bed, I began mulling everything over in my mind. As I reflected on what I went through last year (mammogram, magnification views, biopsy), and what I have gone through this year (mammogram, magnification views, biopsy, wire localization, lumpectomy – to be followed by reexcision and seven weeks of radiation), combined with what I’ll have to go through in future years (all of the above, plus yearly MRI’s, just to keep close surveillance on the situation), I began wondering whether I should consider getting the bilateral mastectomy done after all – even though I didn’t test positive for the abnormal gene. With four out of seven women in my family with breast cancer, there still seems to be something genetic going on. (Dr. Einspahr explained that there are some cancer-causing genes which haven’t been identified yet.)
After considering the pros and cons of a bilateral prophylactic mastectomy, I decided to get up and make a list. The results were extremely persuasive. On the pro side were things like: no need for further mammograms, magnification views, biopsies or lumpectomies, and no need for future radiation or chemotherapy. But the most compelling benefit would be that I can reduce my risk of developing an invasive cancer by 90-95%. In my mother’s case, she had a mastectomy, but it was too late. Although I realize that there are no guarantees in life and I may still have to undergo some measure of monitoring, since the type of cancer I have did not spread, I just feel like I’m in a unique position to obtain the maximum benefit from a bilateral mastectomy by attempting to prevent something invasive before it has a chance to get a foothold.
After I finished compiling my list, I began paging through a resource book titled “Show Me” (published by Penn State Hershey Medical Center). The book contains pictures and personal stories of women who have undergone various breast surgeries followed by breast reconstruction. One of the stories was about a woman who started out with the same thing I have, DCIS. They performed a lumpectomy, but they didn’t achieve clear margins. (Apparently this is quite common with DCIS since it is too small to be seen.) So she had the reexcision done and hoped that would be the end of it. But they still didn’t get clear margins. In fact, that time they found an invasive cancer, so she opted for a mastectomy. Her story really made me think.
The next day Keen and I went on a long walk and I told him what I was thinking. Even though he’s never wanted me to have to go through such a drastic procedure, he heard me out and could understand my point of view. I told him that it would be like having gangrene in your leg. Yes, you may have to lose your leg – and nobody wants to go through that – but the realization that it will ultimately save your life greatly diminishes the emotional impact of the ordeal. I also explained that I didn’t want to have my life hijacked and disrupted every year about this time. The stress, anxiety, and pain I will have to go through year after year (not to mention the time and expense), just to monitor the situation, is too much. In my mind, a double mastectomy provides a long- term solution, as opposed to a short-term solution that only gets me through this year.
Later that day we had a family meeting to discuss my change of heart. Josh, Keen II, and Kirk all understood my reasoning process and agreed with it. (My daughters-in-law, Erin and Lisa, our parents and siblings have been incredibly supportive, too. And Jared even called from overseas to offer his support.) Basically, if I am comfortable with my decision, then my family will support anything I want to do – especially if it will reduce my risk of developing something invasive in the future. I told them that I don’t want to spend my life putting out little fires and hoping that an ember didn’t get missed. I would rather fight one big war than multiple little battles, especially when my chances of success are greater. As Keener pointed out, the seven weeks I would have spent driving back and forth for my daily radiation treatments, I could be spending in recovery.
I have spent a great deal of time researching this issue from every angle and I have spoken with several women who already had this procedure done. In addition, I’ve consulted with a nurse oncologist at Mercy Hospital and several doctors including Dr. Bernita Berntsen, Dr.David Einspahr, Dr. Diana Katt, and my brother, Joe – and they all agreed that a prophylactic mastectomy is a reasonable approach for women like me who are at a higher risk of developing breast cancer. In fact, my brother said that I’m a prime candidate for the procedure, due to the fact that I have already had a form of cancer myself, and I have a strong family history. Apparently, our insurance company recognizes the benefit in prophylactic mastectomies, too, because they informed me that they will pay for the procedure if I have two or more immediate relatives (i.e. mother, sister) who have had unilateral breast cancer. (I have three; four including myself.)
That’s not to say that I haven’t experienced any fear or trepidation about all of this – especially now that they have scheduled a date for my surgery – June 21. I told Keen it feels like I’m walking a plank, and he replied, “It’s not a plank, it’s a bridge.” Even though I have other options, those options only get me through this episode, and I just don’t feel like I can go through all of this year after year. It would destroy my spirit. I don’t like any part of this. I am not a good patient. I hate all the procedures and the anxiety that accompanies them. I don’t like sitting in hospital waiting rooms waiting for the beeper to go off. I do not like it, Sam I Am. I want to live! I have a husband, children, and grandchildren to love; people to help and books to write.
Although I feel comfortable with my decision, there is one obvious aspect that is particularly difficult – losing my breasts. I came into the world with these breasts. I nursed four babies from these breasts. I’d kind of like to keep them. Recently I had a dream/ nightmare where I was introducing myself to someone and I felt like I should announce: “Hi, my name is Eileen. These aren’t my real breasts.” There’s a part of me that wonders if I will still be a real woman if I don’t have real breasts. Dr. Berntsen put it simply this way: “We are not our breasts.” I will be the same Eileen Umbehr I have always been on the inside.
“The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart." ~ 1 Samuel 16:7b
And the heart of a person is the important part anyway.
“Do not let your adornment be merely outward--arranging the hair, wearing gold, or putting on fine apparel-- rather let it be the hidden person of the heart, with the incorruptible beauty of a gentle and quiet spirit, which is very precious in the sight of God.”
~ I Peter 3:2-4 (NKJV)
My friend Scott shared an inspiring story about his own mother who made the same decision 20 years ago, and she hasn’t had a recurrence since. He wrote:
You are so very much in my heart and in my prayers--all of you. So much is going on in your world with the decisions you face, your sister’s announcement, the arrival of Emma Eileen, and the upcoming arrival of the new baby. I've known you a long time and one thing I've always been certain of, even when we were scrawny, green little pups at SAS, is that you are a wise woman. You are able to look at all sides of an issue--no matter how unpleasant--and wrestle with it however long it takes until you come to the conclusion that is the wisest and godliest one available to you. Whatever you decide will be the best for everyone concerned--I truly believe that. As your family surrounds you with their loving arms and prayers, know that your old pal Scott is in the circle too.”
“My soul, wait silently for God alone, for my expectation is from Him.” ~Psalm 62:5
Lisa and Eileen ~ Two weeks before Katelyn's birth
