Living with BRCA - The Surgery

Living with BRCA - The Surgery

PREOPERATIVE: 

In my previous post, The Journey Begins, I went into detail about the number and type of physicians I see for preventive care due to being BRCA II positive. Ultimately, my healthcare team and I decided to undergo a risk reduction bilateral mastectomy. My decision to undergo the surgery was based on many factors. I was facing the emotionally taxing reality that I have an increased probability of developing cancer and living with the constant pain/swelling caused by Gynecomastia was taking it's toll on me. It was mentally and physically exhausting to worry about what could happen if I didn't consider surgery. It was also affecting my job in IT; it is hard to provide quality care to your customers if you are grumpy due to constant pain.

Prior to surgery, I had a meeting with each physician to make sure we were in agreement with my plan for surgery. I was forced to make some lifestyle changes before being approved for surgery. In my case, my doctor's demanded weight loss and a cessation of tobacco products. I submitted to a urinalysis to verify I was tobacco free a week before surgery. The surgeons' offices will also provide you with a list of tasks to complete and items to have on hand. The weeks leading up to surgery will include lab work, obtaining medical supplies, running to pharmacies to fill any scripts, and other errands.

Just so everyone understands, I even went to St. David's risk profiler web site and took the online quiz to determine if I was a candidate for surgery. I am assuming their gender bias does not take BRCA mutation in to consideration and has nothing to do with me personally :-)

SUPPLIES

Here is a list of supplies I didn't know I'd need:

• Dry shampoo
• Hand sanitizer in every room of the house, especially next to the bed
• Hand lotion: The surgical soap will cause very dry skin
• Shower chair: My daughter provided me with a shower chair. I ended up not needing it, but it may be helpful for some folks.
• Mastectomy pillows: There are pillows specially designed to reduce stress on your body when you cough, ride in cars, or experience soreness.
•  My daughter told me about a wonderful person that makes Mastectomy Lap Pillows. I cannot endorse them enough: Check out Pink Pepper Co.
• The same daughter told me about another wonderful person that makes protection while in vehicles. Check out Seat Belt Pillow.
• Elastic-waist pants, shorts, and shirts that button up.
• Exam gloves for touching body or drains - important for the individuals who will be caring for you
• Milliliter measuring cup for drain cleaning: We found these at a local grocery store (HEB), but the hospital also provided some. Each drain should have it's own measuring cup.
• Refrigerator items: Buy items in small containers as you won't be able to lift heavy items.
• Your favorite soda water in 12 oz cans instead of 2 liter bottles.
• Milk in 1/2 gallon instead of gallon jugs. 
• Prepackaged meals like those at HMR.
• Compression vest: This will set you back about $120 each. I was measured for this vest at the plastic surgeon's office. I ended up buying two vests that fit but I wish I would have bought 3 or 4. My wife did laundry everyday in order for me to have a clean vest to put on in the morning. Plus, make sure you allow 2-4 weeks for delivery!
  
   
• A couple of belts to hold drains - This will be worn in the showers so it should be water-resistant or able to go in the dryer. Fortunately the hospital sent me home with one that works using Velcro.

Important for anyone going through major surgery but in particular mastectomy patients

Prepare for modesty to go out the window. Since this is an invasive surgery, your partner or caregiver will be up close and personal with your body. Everything from wound care, bathroom visits, and showers, be prepared to share these moments with another person. Since you cannot move your arms for a few weeks, essentially your stuck with 'T-Rex' arms, it is easier to go without form-sitting clothing or underwear. Loose pajama shorts work well and provide a bit of modesty for visitors, so it may be worth grabbing a couple pairs prior to surgery.

Information your family and doctors need before surgery:

I created a MS Word form with all pertinent medical information for medical personnel and for family members. I create a new form for each upcoming medical appointment and set the filename to "Medical_Brief-Dr_Name-MM_DD_YYYY-HH_MM.docx". I keep the forms in a shared directory accessible by all family members. This gives my immediate family members access to the forms.

Here's a template of key items for you to use in creating your own version:

MEDICAL BRIEF FORM

Your name, Your birth date

Name of Doctor, Appointment time, Appointment date

Reason for visit

List of Physicians: Table of physicians names.

• Name, Organization, Specialty, Date of next Appointment

Current Condition: Table of previously diagnosed conditions

• condition, date diagnosed, responsible physician's name, date of last exam

Drug Allergies: Table of drug allergies

• drug name, symptom

Medications: Table of prescribed medicines

• drug name, dose, time of day taken, prescribed by, refills remaining, last time taken

List of questions for the Doctor: (be sure to leave enough room between questions to write the answer)

SCHEDULING:

You'll need to coordinate the surgery date with doctors, employer, and family. In other words, you'll need to be flexible.

Of course, your doctor's office will handle obtaining insurance referrals, scheduling medical support resources like the surgeon(s), the hospital operating room, the anesthesiologist, and the OR staff.

Your employer may ask you to provide training to the person(s) filling in during your absence. You'll most likely need to contact your human resources department and follow their procedures to obtain 'short term disability' or FMLA, or make some other type of arrangement before the surgery.

A family member/spouse will most likely be your primary care giver once you are released to go home. I will tell you in no uncertain terms, it is impossible to care for your self after a mastectomy. You are going to need someone with you 24 hours a day for at least the first couple of weeks. You and your care giver will need to learn how to bandage your wounds correctly, how to work with sterile materials correctly and applying topological antibacterial creams.

SURGERY DAY

I was given a bottle of special body soap to shower with the night before and the morning of the surgery. I was told to focus on the surgery site. Warning - this stuff will dry your skin out, big time!  Do not use it on your genitals, ears, eyes, or anywhere with a preexisting skin condition.You'll need a bottle of high quality skin conditioner after the surgery. You may want to ask your physician to prescribe a special cream, lotion, or ointment for the skin.

Frankly, even with the privilege of preventive surgery, it's stressful and having a great support network is critical. My daughter, Corie, drove my wife and me to the hospital the morning of the surgery. Shortly after, A.J. and my grandson joined us. Unfortunately, daughter #1 was asked to go out of town for business reasons. We are so grateful for our kids helping out. They are essential in the recovery process and their presence reduced the stress tremendously.

I was told that I would be spending 1 - 3 days in the hospital. My overnight bag had the typical toiletries and a few changes of very loose clothing. I was not able to get dressed by myself, so slip on pants, and shoes are a must. T-Shirts will not work. Really big button down shirts covered the layers of bandages and the compression vest. I also had travel pillows (thanks to A.J.!!) for the journey home.

I brought a couple copies of the latest medical brief I described earlier. I did make a small modification to include the date and time each listed medicine was taken. I believe the nurses and doctors asked me this a gazillion times before wheeling me to the operating room. I also brought a weeks worth of medications just in case I stayed longer. That was a mistake. Here's a lesson learned - the hospital/medical staff will provide ALL medications. Do not bring your medications to the hospital unless you are asked too.

I need to pause for a few minutes to interject the morning of the surgery was extremely stressful. The presence of my family with all of their logistical support really helped but I played games on my cell phone to keep my mind from focusing on the surgery. Anyone with training on dealing with stress will agree that there are physical and mental manifestation of stress. Most of them are not pleasant.

One of the humorous things from this experience was the look on the nurse's face at shift change. From the look of surprise, I'm pretty sure they were not expecting a male patient. One nurse actually said she thought there was a mistake on the status board when she saw my name. I have a warped sense of humor but to me it was funny.

To be clear, my overall experience with the staff at St. David's Medical Center in Austin Texas was absolutely awesome. The entire staff were attentive, compassionate and scored a perfect 10 in all categories of caring for me. Also, my hat is off to the O.R. team, as they tolerated my terrible attempt at jokes before the anesthetist was able to knock me out.

The surgeons entered the room shortly before taking me to the O.R. to 'mark me up'. Now, I got to tell you, I spent almost 21 years in the military and contrary to tradition, I never got a tattoo. So, having lines drawn on me, gave me a case of giggles.

Normally, there are multiple surgeons required for a mastectomy. The Thoracic (chest) surgeon opened my chest and removed the target tissue. Afterwards, they handed me off to a plastic surgeon for liposuction and closing.

POST-OP: 

Tune in for the next chapter "POST-OP" where you will learn what it's like to go through recovery with just mild pain killers. Until next time.