I decided to revisit a post from this exact moment 2 years ago. Some of you may have already read this. To others it may be new to you if you joined me late in this journey. I found it to be a great reminder of God's provision in foresight, but now in hindsight. Happy Reading. And thanks for still being here 2 years later.
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Day #22: Yesterday, marks three weeks since the double mastectomy. I've had 21 days to contemplate each individual day of this experience. The day after the mastectomy which set my mental course (post # day 0 part 2), the first shower (did I even post about that?), the miserable little drain suckers (that's in about every post), but it wasn't until yesterday in the waiting room and then last night la
ying in bed that I stepped back and looked at it all in one big album, instead of individual snapshots.
What have I done? Did I really make this radical controversial decision to have two breasts I had worked so hard to grow (smile) removed? Did I just allow two surgeons I had met once before decide what the physical future of my new "breasts" would become? These impostors I'm now supposed to know and love. Am I now a woman who has had a mastectomy? Equally as shocking, am I now a woman who has implants? The big picture feels life changing -at least temporarily at this very moment. It affects my marriage, my faith, my personal medical course, my topsy turvy emotions of today. It certainly, hopefully only for the short-term affects my view of self. It even affects me view of you.
Somehow, I'm supposed to return to work and the rest of the world and function as though I am who I was when I left August 3rd. Some people at work don't even know this happened. I have to admit I am changed. And I'm going to need time to transition. Time to settle out. Time to fit this new chest and all that comes with it back into the world. (Maybe there was some hidden rationale in my surgeon demanding I be on house arrest these last three weeks.)
How did I even get here?
Back in June, on a Thursday, I was sitting in clinic waiting to see a patient. The Attending Physician I work with had just returned from a national oncology conference and was giving us the low down on some of the hot topics of discussion of the past week. Now let me step back it's interesting to note I'm only in clinic two days a week. The rest of my week I'm in another building with another life. So had this physician returned on a Monday, I would have missed this discussion in it's entirety and be none the wiser for some time to come. So the timing of these events this is lost on me. He was telling us about all the new pediatric oncology research that focused on exposure to radiation therapy and long term outcomes. We've always known radiation therapy is a yin and a yang, particularly when used in children. It's a terrific modality for curing certain tumors, but it carries it's own potentiallu negative risks while propagating the positive curative ones. Historically, Hodgkin's lymphoma patients received very large doses of radiation to the chest region, where primary tumor most likley lived. And we've always known these large doses, while needed for tumor kill, can lead to secondary risks later in life. For female teenagers, breast cancer is one of these risks. We've known this for years. What we didn't know was the magnitude of that risk.
Back to the meeting highlights, the Attending Physician began quoting off the new statics on the radiation data.
Well, let's just say my ears perked up when I heard numbers that were much higher than previously published. (I had been treated for Hodgkin's Lymphoma when I was 16 so this was not only professionally relevant but personally relevent.) I simulataneously, while he conversed, went online to the meeting abstracts to pull the data myself. And there it read females treated with 20gy radiation doses are at least equivalent in risk for breast cancer as women who carry the brca gene for breast cancer. As I continued to read, and mentally calculating my own dose of 40+ gy being double that number, light bulbs start going off in my head like that on the red carpet. Percentages ranging from 30% up to 90% as you advance in age. What?!?! We had thought it like 10-30%. That was a risk I had known and even prepared for. Roll the dice, it may happen, but more likely not. I've done cancer once, surely not twice. But 90%???? Are you kidding me? That's a whole other ballgame. That not a statistic, that's a prediction! That's.............awful!
I quietly try to gather my wits and think rationally about this data. I formulate an email to a breast oncologist I work with in my other job. (Reminder, this life altering conversation happened on a Thursday when I happened to be present, I started working with a breast oncologist as of six months ago in my brand new job, I have access to brand spanking new medical literature..."I'm here God, it's me Margaret"?)
Email out: "Breast Oncologist, have you seen the new breast data that was just released for Hodgkins patients? What do you think about me doing yearly mammograms in addition to the yearly breast MRIs I'm already getting? I had lymphoma and was treated with more than 40 gy doses of radiation to the chest as a teenager."
Email in: "Sally, yes, I saw the data. I didn't realize you were a lymphoma survivor. I think you need to see a breast surgeon......"
And at that very second I mentally checked out. Stopped reading. Had tears pool at the bottom of my eyelids.
Excuse me? What in the world did he just say??? A breast surgeon? What do you mean a breast SURGEON? Didn't you mean to say "yes, please schedule a mammogram at your earliest convenience."? Why in the world are you mentioning a breast surgeon?
Ok check back in, compose yourself. Wipe the fluid from your eyeball and retype the email.
Email out: "Breast oncologist, did you mean to write the word surgeon in your email? I'm a little confused. Did you mean to say oncologist?"
Email in: "Sally, I think it would be wise for you to meet with the chief of breast surgery to discuss mastectomy options. Let me talk to her today about your case and I will get the appointment set up for you as soon as possible."
Hyperventilate. Mind racing. Punch in the stomach. Oh my gosh, please don't let me throw up right here in my laptop in front of everyone. Hold it together. Pull up your boot straps. Got-to-get-some-air-now. Walk out of the room to the bathroom and ball your eyes out. And then it also hits me while standing in that bathroom....Ron!
Let me insert here that all of this unfolded in a matter of about 3 minutes from the time my attending walked in all excited about the conference he just attended to me being set up in an appt with a surgeon. How does that even happen?
Email Ron frantically. Email my sister frantically. Wait for response from oncologist. Pull up data on brca gene. What in the world a prophylactic mastectomy? Women actually do that????? I really don't think I had any idea that women were finding out about brca gene results and scheduling mastectomies. Why do they do that? And why would I do that? That is radical. That is crazy. That is taking matters into your own hands. Do I not trust God's plan for my life? If I'm destined to have breast cancer, we just deal with it when it comes. I'm not someone to run from trouble. I like to roll the dice and trust God in the decisions in life. I've got this. Mastectomy, no way. (This, another free flowing train of thought spanning about 45 seconds).
Keep reading the article, Sally..unlike brca gene patients "hodgkins survivors, having already reached the maximum doses of radiation, will have limited treatment options for secondary breast cancer...(paraphrased)"
Let me re-read that. Again. One more time.
Frantically email Ron a second time. Desperately watch the clock. I've GOT to get home! This room is closing in on me. I'm of no use to these patients today. Devastated. Confused. Frightened. Surprised. Blow to the stomach. (Little did I know that Ron was having the the exact same experience sitting at his work desk as he later told me).
So it was no longer IF I was going to get Breast cancer, but more likely WHEN. And when that were to happen, my treatment options would be limited to no radiation.
Long story made semi short. Two weeks later, I'm sitting in an exam room with two surgeons discussing my mastectomy plans. Two weeks! Who gets an appointment with the chiefs of breast surgery and plastic surgery in two weeks? God does, with a little of "it's all who you know" thrown in for balance. By the end of the appointment I had a surgery date scheduled for August 7. The delay only because one of the surgeons was headed away on vacation for two weeks. Those four weeks would become very challenging for me with me subconsciously processing the what was to come. The radical procedure was going to happen! I chose the crazy option!
I should insert here, I'm a unique case. I got massive amounts of radiation as a teenager. Dose is everything. Timing and age of exposure is everything. Not every radiation patient has these risks. There is a lot of data that has to be sorted through for any given patient. I am NOT advocating mastectomy for radiation patients. I'm not even advocating mastectomy for hodgkin's patients. I'm advocating that you research the data. Determine your risk. I'd bet for most women, mastectomy is a bit drastic for your statics. For me, it became a very reasonable option that dropped my risk from up to 90% with limited treatment options down to about 5%. Less than that of the average reader reading this post.
I'm advocating support for women who choose this crazy life saving option. This is a radical life changing choice, and women need support in that. No judgment. No gossip about the "did you hear". No questions about implants and a boob job. Don't ever ask "how big are you going?" Please only allowed yourself to offer Support! Encouragement. Belief that this hard choice is able to be done successfully. Cheers of "you can do this" should be shouted through your telephone, your open front door, across the restaurant table as she sits there telling you her incredible delimma and suppport that she can be open about this extremely personal journey. Understand that this is an awful decision to have to make and that this surgery is not knee surgery. I know, I'ev done both. She needs Love. She needs to know what she feels is justified, even if on some levels it seems trivial.
What she (now me) is feeling is something I never previously understood. Fear of the what ifs. Guilt for her thoughts of vanity. Shock that this is happening. Concern over her spouse and what he may think. Disappointment over reconstruction options. Guilt for feeling that disappointment. Shame that having no boobs affects her like it does. Shame that this journey impacts her like it does when she didn't even have breast cancer like some women have to struggle through both Breast Cancer and mastectomy. Confusion as to why this affects her so drastically. Worry that God may have wanted her to choose differently. Frustration over the physical limitations now present. Anger at her lack of control. And the list goes on. Trust me, it's best to justt sum it up and say "She feels a lot!"
Anyway, back to the original point of all if this. In order to process the big picture, I have to understand how those first few weeks played out. How timing is everything. How God chose a Thursday for this discussion to take place. (Reminder, this was brand new literature your average person would not know about for quite some time to come. I work in oncology.) How God, not even six months before crossed my path with that of a breast oncologist that I work on several projects with. That God would grant Ron and I wisdom to recognize His role in placing me at the right place at the right time and his offering this option to us. That Ron would make his decision that I should go through with mastectomy before I would and that they would match up. Maybe God had a specific plan not only to save me from a tremendously difficult journey with breast cancer, but to change me, challenge me, grow me. Was Sally going to let fear of a drastic surgical procedure guide her? Was Sally going to trust that God had big plans for her or even someone else by choosing the hard road? Who was Sally going to put her faith in?
I'm changed. I'm challenged. I'm broken. I'm restored. I'm accepting my new breasts...as strange as that sounds. But most importantly, I'm allowing this journey to be whatever vessel God chooses in growing His kingdom. I may kick and scream along the way, but I'm still moving forward. I take steps back. I doubt things, but I'm committed for the long haul. Come what may.
Now, pray that these next few weeks are smooth. I have a great bit to accomplish in a short amount of time. Pray for my transition back into life. Monday, I start removing some of my restrictions. In two weeks, back to the surgeon to assess everything. Will the skin survive, is my mobility and strength back, have the impostors settled in their new home. Is the swelling and pain gone. Can I handle going back to work? Can I drive? Can I shower in my own without falling apart emotionally in the process?
A lot happened in three short weeks. More than I could ever have imagined. I hope to be a better person on the other side of this. I hope you found a new understanding of preventative mastectomies. And maybe you saw a glimpse of God's provision in the awful (and incredibly amazing.)
