In The Rearview Mirror - What I Wish I Had Known About Post Mastectomy Challenges
When you are diagnosed with breast cancer, what’s probably foremost in your mind is to expedite surgery and treatment options to rid your body of the cancer. In another blog, I talk about how to prepare for a mastectomy in a practical way by getting the supplies you will need for physical recovery. What I didn’t discuss in that podcast, and what is most often not discussed, was how I would emotionally feel about the loss of my breasts. In my book, A Teacher’s Journey…What Breast Cancer Taught Me, I recall the morning of my mastectomy when I looked in the hotel mirror after showering. I felt the need to verbally say goodbye to my breasts.
Suddenly, I was filled with emotion and terror with visions of how I would look when they were gone. Not that they were great, mind you, I had nursed both my sons, and they were fifty-three years old and saggy. Doubts surfaced and I thought do I really know what I’m doing? I then burst into tears. My husband John, always my rock, hugged me and reassured me it would all be ok. After taking a Lorazepam that my surgeon had prescribed to settle my nerves, I felt better and ready to go. Well, did I really have a choice anyway?
No matter how you feel about your breasts, whether they are too small, too saggy or too large, you WILL grieve them. They are part of you. They are part of your femininity, sexuality and a large part of love making. You have a history together…which are now only memories. I had been told that I could possibly have some minor sensation after recovery, but there were no guarantees. My mastectomy was a skin sparing with expanders placed during surgery, but my nipples would not be spared. Since I had extensive LCIS and DCIS, my medical team could not assure me there weren’t cancer cells in the nipples. At this point, there was no sense taking a chance.
Although I was resolute in my decision, and certain it was the right choice given the information and options at hand, I was still tormented. That fateful morning in the hotel before leaving for the hospital when I cried, it was a foreshadowing for all the tears I would shed in the coming months.
When I first woke after surgery, there were ace bandages wrapped tightly around my chest. The pressure was intense and I thought it was from these bandages. The reality was it was the expanders. Nothing can prepare you for the “iron bra” feeling of expanders. They are extremely uncomfortable and getting used to them is a huge part of the first few months of healing. They are hard, immoveable, and unforgiving when attempting to get comfortable for sleep.
Many of my breast cancer friends, were able to choose DIEP flap reconstruction. This was not an option for me with the plastic surgeon I selected. Her expertise was limited to using the stomach area for the tissue needed. I didn’t have enough tissue available in that area. What I wish I had known is that there are specialized surgeons that are trained to harvest tissue from other areas such as the buttocks, thighs or hips (I would have loved to use that area). This may have involved travel for this expertise, but I would have SO done that to have natural tissue as my new breasts in lieu of implants.
Although I was so fortunate as to not require chemo due to my low oncotype score, I was not prepared that the healing process and completion of the reconstruction would require a long twelve months of procedures, check-ups, surgeries and mental coping. I used yoga, meditation, counseling, and walking to decompress, but I wish I had been more mentally prepared. Most medical teams, or at least mine only volunteered information in small doses. If you don’t ask a lot of questions, they (the doctors) don’t really give you a true picture of what’s ahead. I not only asked a lot of questions, but I gained immense information by networking with survivor groups and those experiencing similar treatment.
The word “survivor” is a tricky word. No one actually “survives” breast cancer….one only gets through the ordeal. I was not prepared that I would never be the same. I find myself referring to events as pre breast cancer and post breast cancer. Using the word “survivor”, feels superstitious as the recurrence possibility will loom forever. I have since adopted the newest reference of NED…No Evidence of Disease! As another survivor so aptly expressed, “The only way to know if you are truly a breast cancer survivor is if you die of something else!”. No one wants to find out that way.
My journey was simply that…my journey. Every journey is unique…just as each person is unique. You can prepare yourself by reading others’ stories, but yours will not be the same. Just as there are many types of breast cancer, there are so many factors that are unique to your story that it’s important not compare yourself to others. Take time for you. Don’t fight what your body is requiring or telling you to do. Recovery is slow and should be at your own pace. Trying to keep up with expectations based on others will only add stress to an already overwhelming situation. It isn’t and cannot ever be the same for everyone.
Another unexpected challenge was that I never thought I would need to purchase new clothes. I assumed that since I had requested to be the same size after reconstruction, my clothes would fit. I was surprised that they did not. Since implants are not as “mobile” as real breasts, I had to go up a dress size to have the bodice fit. Initially there is also swelling that contributes to size and this changes throughout the process. I had to adjust to more comfort than style until the process was complete. When you are struggling with body image, this is a tough pill to swallow.
To put all this in perspective, I am blessed and fortunate to be eleven years NED. It has taken years, but I now accept my new “normal”. Getting involved and becoming a patient advocate has been one of the most rewarding and healing blessings. The friends I have made and the experiences I have shared have been an invaluable part of my life. My mission now is to give back. If you know me, you know my mantra is the bible passage, “To Whom Much is Given, Much is Expected”. Not to be cliché, but the more I give, the more I receive.
Thank you for taking the time to read or listen to this Podcast. Please share it with someone you love who may be facing this journey. Remember, tomorrow is not promised so be present in today. Be kind to yourself and take time for you. Again, I must leave you with this thought, “Cancer is a Word…Not a Sentence.” Stay well and God Bless!