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This post is not about photography. The topic is very personal; I debated even writing it since commercial photography is a heavily male-dominated industry and these issues may be uncomfortable for some colleagues or clients that stumble across this page. But I decided to forge ahead because we ladies shouldn’t feel shame about issues of women’s health. It is what it is.
Many of you have followed the story of the premature birth of our son, Rawley, and all of the subsequent changes we’ve experienced in the past 18 months. This post is about the next, and hopefully final, chapter in this very difficult season of our lives.
First, a little history. In 2006, I was diagnosed with fibroid tumors at the unusually young age of 28, and had a myomectomy in which seven tumors were removed via abdominal surgery. The doctor told me then that I should have children within five years, due to the chronic nature of fibroids and the scar tissue on my uterus. I met Nathan in 2008 and we married in late 2009. So, less than two years into our marriage, my hypothetical “fertility deadline” expired – before Rawley was conceived. I knew carrying a pregnancy to term may be difficult for me, but I’d never even heard of pre-term premature rupture of the membranes (pPROM).
After Rawley’s birth, we learned several things:
- Once you have one pPROM, you are more likely to have another.
- Once you have one premature baby, you are more likely to have another.
- My uterus is very scarred, first from the myomectomy, and then from the high classical incision made during Rawley’s emergency delivery.
- The docs weren’t sure how I’d gotten pregnant in the first place (because I “have so much pathology in my abdomen”).
- If I got pregnant again, they’d deliver me at week 35 due to avoid uterine rupture.
- A portion of my bowel adhered to the back of my uterus after the myomectomy, which complicates a hysterectomy and potentially requires a temporary or permanent colostomy.
Based on all of those incredible risks, and the sense that we’d already dodged a bullet with Rawley, Nathan and I agreed not to press our luck by attempting more biological children. I planned to have a hysterectomy in 2014 once we settled down in Illinois and could plan financially for the out-of-pocket costs.
But, after arriving in IL, things started to snowball. We found out via various tests that I have 11 fibroids – more than ever before – and a 8cm fluid sac around my right ovary. I also had a positive result on twice on the CA-125 blood test, which indicates the possibility of ovarian cancer. Thankfully, the second CA-125 value was lower than the first, which is a very good sign. In the meantime, the symptoms of fibroid tumors I’ve had since 2005 just kept getting worse and worse.
Based on all of the above, plus the fact that my grandmother died of ovarian cancer, my doctor decided in October that she wasn’t comfortable waiting until next year to operate. Her primary concern is the new 8cm fluid sac rather than the fibroids. Unfortunately, the only way to know if that new mass is cancerous is to operate. There is no test or imaging tool for ovarian cancer.
So, on Monday, Dec. 16th, I will have a hysterectomy. The surgeon will attempt a laparoscopic procedure, using robots (amazing technology!), but if for various reasons they cannot continue laparoscopically, they will switch to abdominal surgery. They will remove all of the fibroids and the fluid sac, detach my bowel and remove my uterus. While I am under anesthesia, a pathologist will examine the fluid sac. If it is benign, surgery ends. If the fluid sac is cancerous or pre-cancerous, they will also remove my ovaries (triggering menopause), fallopian tubes, and lymph nodes.
So, why share all of this? Well, have some more noble reasons, but I will share the selfish stuff first. I want as many people as I can possible get to start praying and sending good vibes and thoughts our way. Hopefully in a few weeks, with your prayers and good thoughts, I will feel like I was over-reacting for even writing this post.
Specifically, please pray:
- for a laparoscopic, not abdominal procedure, allowing for a much shorter hospital stay
- that they can detach my bowel from my uterus without any need for a colostomy
- for benign pathology on the fluid sac, and no required post-op treatment
- that I can keep my ovaries and avoid menopause
- for provision for Rawley’s care and Nathan’s sanity while I recover
On a more benevolent level, I wanted to share my story because I think most women my age are unaware of these types of health risks, despite the fact that as many as 80% of all women will have fibroids before they reach menopause (!) and many, many women will have a doctor recommend a hysterectomy for various reasons as they age.
Why is this so? Why do we not have better treatment for these common problems? Why do we not know what causes them? Is it bleached tampons? Birth control? Diet? Genes? All of the above? Why do we not demand cures?
- For some reason, I think if 80% of men got tumors in their boy-parts by age 50, there’d be more answers.
Ladies, educate yourself about gynecological health and the symptoms of silent diseases like ovarian cancer. And be your own health advocate. I could write a book on this topic, but you must take charge of your own health care; ours is not a perfect system and things slip through the cracks.
I know many people are dealing with much worse than this, and you have my prayer in return. But the past few months have been super scary. When the doctor suggests you may have The Big C, it is a profound experience. I’ve had such a wide range of emotions I am not sure I have the words.
I have no idea what I will be facing when I wake up from anesthesia on Monday. Facing this type of uncertainty – particularly as a parent – pushes a Type A, plan-oriented, control-freak, worry-wart like me to a place of total vulnerability. I have no control; I worry about big and tiny things.
Will I have four tiny incisions? Or a long vertical one with staples? Will I still have ovaries? Will I have a colostomy? Will I have cancer? Will I be in the hospital all week or just overnight? Will my dog jump on me and hurt me when I get home? How will I take care of Rawley once Nathan goes back to work and family leaves town? How will I get him in his car seat? His crib? Will I get bored? Will anyone visit me? Will Nathan still think I am feminine when my girl parts are gone? Will I still feel feminine? Will Rawley hate being an only child? Should we adopt? Will I feel better or worse? If I have cancer, will I survive? If not, who will mother my son? Will Rawley remember me?
As I told some friends, nothing puts fear in my heart like the thought of my son not having his mother. Any parent out there will understand this. But, this isn’t the first time I’ve had to trust that he would be okay. I know he is here for a reason. In my better moments, I believe that all of his needs will be met; they have been so far.
This may seem overly dramatic. (Welcome to my brain.) Nathan and I are relatively confident that I do not have cancer. But the fact remains that the doctor is moving up my surgery date because there is some risk. So, we’ve been sitting in that knowledge, and it’s stressful. I’ve had nightmares and days of total peace, and everything in between. I am aware of my own mortality in a way that I never was before. Mostly, I am ok with that; I am even somewhat thankful for it. Tim McGraw’s “Live Like You Were Dying” has been running through my head a lot. (I haven’t been skydiving or bull riding though. I have too much laundry.)
I know that eventually my time will be up. Hopefully not for a long, long time, so I can raise my son. I’ve had such an incredible life and I am grateful to the depths of my soul for all the love and joy and adventure I’ve experienced. The past few months have given me that clarity. For that, I say, “thank you.”
I’ll try to update you about the outcome of my surgery as soon as I can next week! And I hope to be shooting again by February. Thank you in advance for your prayers and support! xoxo
Update 12/13/13: I am NOT having surgery! During routine pre-op testing, my 3rd CA125 came back totally normal. So, after speaking with my doctor at length, we agreed to do a stat ultrasound to examine the area of concern on my right ovary yesterday. That scan showed a smaller mass, and no new problems. A normal blood test and shrinking in that area is not consistent with cancer, so we agreed surgery is not necessary at this time. I will have another scan and blood test in 4 weeks to double check that everything is stable, and in the meantime, try and make some diet and lifestyle changes to control my fibroid symptoms. I will share what I learn in future posts! Thank you all for your support and encouragement! xoxo