Oh the Places You'll Go!

I really did not know how to plan for my activity level after the surgery.  Everyone is different and I have been told I handle pain well, but I was amazed how mostly-normal my summer was.  Now I am wondering when to schedule my reconstructive "exchange" surgery.  I wonder what I'll be able to do.  Should I do it before or after parent conferences?  So I am going to list off some weekly highlights to show what I was able to do, just so you have an idea of how productive you can be.  Remember, you are not sick but you don't want to over do.  I needed sleep the most, that was very important and since I was out of teaching for the summer I was able to get plenty. 

Week 1 - have visitors, go for a short car ride

Week 2 - dinner out, shower independently, go to a charity event, go to a movie, meet with coworker to plan

Week 3 - family birthday party for son, lunch with friend, band concert, tour Children's hospital, dinner at college lecture, county-wide political dinner, mani-pedi, baseball game, senior citizen birthday party, sister's bday dinner

Week 4- dentist, hair cut, clothes shopping, nail appointment, husband's major donors party, cut off loads of corn for freezing

Week 5- church patriotic service, trip to Iowa to visit 3 prospective colleges, walked in 4th of July parade, neighborhood party, family party, fireworks display, trip to lake for 3 days. Not able to get in lake! 

Week 6- All Star Celebrity Game, photos around KC for All Star Game, Fan Fest field trip, Shakespeare in the Park, Farmers Market

Week 7 - Mom's bday dinner, two more college visits in MO, trip to husband's office in Jefferson City, 3 day trip to Branson, theme park but limited rides, shopping, walking a creek, watching family swim

Week 8 - back to school training all week with numerous multi-hour classes daily, attend a late night play, historic preservation tour and dinner on the Plaza, tour and dinner with parents, niece's bday and activities

So you can see it has not slowed me down.  I thought it might help to see the variety and increasing ability.  We return to school (as teachers) in 10 days. I am anxious to see how my body handles a full day.  School starts on Aug 15 and with a large class of 26  I really wonder if I'll be rushing home to visit my recliner.  I'm sure, as everything else has, it will all work out.

For now I return to school and seek to find a time for my second surgery that will work with reading tests, grade card deadlines, parent conferences and starting a student teacher - all in October.  I have faith it will all work out and my healing will continue as smoothly as it has started.  

If something arises, I'll keep you posted otherwise - see you in October (I hope!), perhaps November! 

Cammy

Post opt treatment till next surgery

Eight days after my surgery my right drain was taken out.  You track the fluid that comes through daily and when it gets under 30 mL a day, they consider taking them out.  The worst part of drains is the clogging and you have to "strip" them.  It is not hard just frustrating, so I was glad for it to go.  

The nurse cut the stitch and pulled it out, no pain but man, was it long! Never knew that much was inside me! The plastic surgeon called me at home two days after my surgery which was a nice touch.  He reminded me about removing the gauze and that was the first time I saw my breasts' incisions.  Very clean horizontal lines, not bad, somewhat swollen and a little bruised in color.  Since I had a lot of tissue to work with and they half filled my expanders, thus I had breast mounds which was nice. 

Nine days after the surgery, my husband and I went to the general surgeon and he released me from his care.  I was so taken with him and would recommend him for internal needs in a second.  Awesome work! 

Ten days post op, I returned to my plastic surgeon and the left drain was ready to come out! Yea! I had my first social event that night and tubes would definitely impact what I could wear.  I had purchased a dress before the surgery knowing it might not work and it didn't.  My daughter had to drive me to my appointment, so she took me to Dillard's where I must have tried on 12 different dresses.  That itself was tiring.  I found two that looked good so I bought them both and I slept the whole 20 minute drive home! 

My first fill to the expanders was July 9; you have to wait 4 weeks post op.  By this time I was able to drive myself.  They numbed the area and put in another 125 mL (?) not really sure.  The expanders have a magnet that identify the port.  In his office, the surgeon uses another magnet to find the port.  The solution is in huge syringes that look like reverse amniocentesis.  It really was not painful.  I took two Tylenol before I arrived. They say it is good to feel it because it means you have feeling back in your breast. 

I returned two weeks later for another fill, but my surgeon felt like the pockets were wide enough. Another blessing to having a lot put in during the surgery and a body that was already "expanded."  I want to end up a C-ish size and he is being careful to not get them near the size they were.  

So now we wait until I am 4 months post op to do the exchange surgery where the expanders are exchanged for the silicone implants.  I have been released to do "normal" things, being cautious about my choices. My family went zip lining in the Ozarks and as much as I wanted to do that, a harness across my chest and hanging from a wire within 2 months of my surgery just did not seem wise.  It has been a really hot summer with multiple days over 100, so I have been inside with little physical activity.  School is starting soon and I will get into some type of routine.  

There were many things I could do.  So my final post will list all the things I could do in these past 8 weeks post op.  This is so doable and so worth it! 

List of helpful items for a patient

Here are a list of things that were helpful to me during my recovery:

1-the tiny travel pillow to keep the seatbelt off my chest in the car

2-another travel pillow to sleep with on my chest, you just feel vulnerable and this pillow helped.  I'm still using it 8 weeks out.  As I lay on my side, it travels with me and cradles my expanders as they seem to flop over and this cushions them.  I LOVE MY TRAVEL PILLOW!!

3-button up pjs, I found some cute Liz Claiborne top and short sets at JCP and they almost looked like casual day clothes I wore all day, great for visitors.

4-Kmart housedresses that snap up the front.  NEVER thought I'd wear one of these but they were so helpful the first few days, one less thing to pull up around your waist, easy open.

5-soft ice packs, conform to your chest

6-bell to call for help

7-vest that held my drains.  I bought a similar one at Nordstrom for $60, but the hospital gave me one

8-sidetables near my chairs & baskets to keep things organized on them with travel kleenex packs, etc. 

9-a daily RX box would be good because you forget how often you have taken all the pills

10-cup with straw and lid, you are clumsy and have many other things to think about than a mess

11- footy socks, sleeping in a chair your feet hang out from under the blankets

12- a bathroom basket to corral all your meds and basic toiletries.  It was helpful to not have to lean over and into my drawers I usually use. 

13- breakfast food- a cherry coffeecake and egg casserole served for many meals and treats for any time of day

12-my recliner, never had one.  Lived in it for 2-3 weeks, still love it!

13- journal to track meds, gifts, drain outputs, etc

14-chocolate, because you always love it! 

15- gift cards for food

16- MEALS!! This was a huge help.  My dear neighbor Rachel organized a meal plan for three weeks.  On Mon, Wed, Fri a family would bring us a meal.  It was great to not have to worry about shopping and cooking post op and I really enjoyed the visits as people dropped them off. She gave me a schedule of the 3 weeks, so I'd know who to expect.  It was a huge blessing!

17- Facebook - I loved the support and sweet comments.  They were so encouraging! 

18-Cards to brighten my day

19- a small project my principal had me do 2 weeks post opt which made me feel productive again.  I needed to feel normal, to be treated normally. 

Other ideas- two weeks post opt a friend came to take me out to lunch and a little shopping, another brought a favorite Sonic drink and chatted for a few hours.  

Any expression, no matter how small meant something.  I learned so much on how to treat others in tough times.  I was blessed to have PLANNED this major alteration.  My heart goes out even more to those whom fate drops all these decisions in their lap with an out of the blue diagnosis.  Mainly, just DO something.  Don't just offer, DO IT! Leave a throwaway dish to lessen the load, make it freezer friendly and just do it.  Mow the lawn without asking, whatever your talent, just do it. Someone will be so glad you did and you'll feel good too.  I could not wait to return the favor to a parent from my class a few weeks later. 

Day after and going home

The day after my surgery, I still felt good. In fact, my Facebook post was that I was waiting for the hard part, the painful part. I kept on my pain meds, trying to head off the pain but it was not excessive at all. French toast was the best neutral food, so I ordered it again for breakfast.  Flowers arrived from my uncle and cousins to brighten my room.  Myron went home to clean up; the governor was in town for an event and he left for that luncheon and I was happy to sleep.  Talked to my family and got my regular vital checks. 

I had visits from my general surgeon and all looked good, as well as another doctor from my plastic surgeon's office.  Both agreed I could go home tonight if I wanted to it was just up to my comfort level. I said we'd see how the day went. 

By afternoon my nurse was ready to take me for a walk and I was ready to get my catheter out.  Both were easy slow processes.  The funny thing about my walk was the way I acted: the same way I did the only time I had ever been in he hospital with both of my kiddos. Getting up to walk around with an IV reminded me of that.  I was about a fourth of the way around the oncology ward (yes, they still put me there even though I only have the cancer gene), I realized I was babying my pelvic area as if that went along with every hospital visit and IV, well it was all I had ever known anyway.  I realigned my thoughts and confirmed that "nope, I was fine from the waist down! " and we shuffled on around.

Myron returned in the afternoon and his sister dropped by for a nice chat with a goody bag.  A magazine, nail polish, hand lotion, dark chocolates, and notepad & cute pencil were a great treat to keep by my bed.  Myron took me for a walk to so he could assess my progress.  I was even faster.

To show you the level of strength I had, I asked Myron to bring back my water jug I received during my childbirth stay.  The larger size with a straw, great idea since I was so thirsty but I could not lift it or tip it to my mouth.  That was my strength level.

One of the best visits was with the breast cancer nurse.  Not only did our kids go to the same school and thus we live in the same area, she brought me the BEST THING EVER for a breast surgery patient.  It was a sleeveless vest with a delicate floral Velcro closure down the front. Inside are removable pockets to hold the receptacles for the drainage tubes.  This keeps them from dropping to the floor, which would be extremely painful. She was glad to meet with me since I did not actually have cancer, a much happier visit than the majority she sees.

Mostly I was just tired, not in pain but my IV was starting to bug me.  I knew if I went home that IV would come out, so I opted to go home.  That was a lengthy process and I ended up ordering a grilled cheese and baked Lays to have one less thing to do once I got home.  

The IV came out and we learned more about the care of my incisions and drainage tubes.  In my pre-op visits I was given prescriptions for four things: 

an antibiotic for 10 days (this can cause a yeast infection, be ready), 

a medicine for nausea, which I did not have so I did not need

a pain medicine, which I took religiously every 4 hours the first two days to head off the pain 

(this can cause constipation, so be ready with Miralax that you can mix into your drink, it has no taste. 

 I liked it in coffee.)

and a muscle relaxer to help with the expanders putting pressure on my chest muscles

I moved to Tylenol very quickly and kept ice on there quite frequently. 

There were some medicines I had to quit 2 weeks in advance of my surgery and 2 weeks after, like Fish Oil and Vitamin E, anything that would cause bleeding.  I did go back to my BCP and multivitamins the next day. 

They wheeled me out and I cautiously sat in the passenger's seat of our car telling Myron to go very slow, thinking the impact of door frames' grooves and anticipating what a pot hole would feel like! My mom encouraged me to have a small pillow to place between my chest and the seat belt and that was excellent advice.  I kept that in my car for nearly two months, weaning myself off of it, desiring it more later with multi-hour car rides. 

We made it home successfully and I sat in a chair with an ottoman in our living room.  A TV tray close by kept my water bottle, kleenex, phone, and other necessities.  For a few weeks I would nap twice a day plus have lengthy nights of sleep. I just could not get enough sleep, but that is the body's way of healing. 

The first night I took my medicines, drained my collection tubes, got a fresh ice pack (I preferred the soft gel ones you can get from a chiropractor, rather than bags of ice) and eased into the recliner in our bedroom.  I slept in that recliner for two weeks or more because it was not possible to lay on your side with the drainage tubes.  It too had a chair side table for my necessities. I set my alarm that first night for four hours so I could take my next medicine dose, use the bathroom and re-ice.  My husband had to get up with me because I could not get out of the recliner without help.  

It was a good night and I got up at 6:30 a.m. before he left for work to eat breakfast and repeat the process.  My teammates from school brought me lunch that day and my bell from school.  It was hard for the family to hear me calling for them when I needed out of the recliner.  I had a housedress-like gown I got a Kmart.  It was a floral pattern so blood would not show, it snapped up the front which was even better than buttons.  That was great to sleep in and wear around the first few days.

I was able to get up and eat at the table with my friends and enjoy a short visit.  Then my mom arrived with loads of food and goodies to keep us going: trays of lasagna and enchiladas, muffins (great for anytime of the day) chicken salad, Bath and Body Works soap to make everybody enjoy washing their hands, and she washed my hair after two days! It was much easier to lean forward in the kitchen sink in the water of the sink than back in the shower.  Later that night I attempted my first shower (you have to wait 48 hours post op) and that was a long cumbersome process with the biggest challenge being the drains, keeping them from falling.  I needed my husband's help for the first 2-3 times.

My incisions were taped and covered with gauze and my body was wrapped with a ace bandage around my torso.  This reminds me, I was glad I was doing this in the summer and did not have to worry about keeping warm.  I showered with the wrap and then changed to a new one after the shower, you'll want to have two.  I crashed after that, earlier in the evening my in-laws had stopped by & we sat out on the patio for a couple of hours and now after my shower, emptying the drains, lotions and all that -besides the normal tasks - I was worn out!

Friday, we had no visitors and I took a walk to the corner of the culdesac, Saturday, my sister and her family brought lunch and she washed my hair in the sink. I took a second shower that night.  I stayed on a every two day schedule for about 10 days, by the third hair wash I was able to do it in the shower.

My range of motion was really improving and I was realizing that as a non-cancerous patient I had the luxury of only two drains.  When cancer is evident and lymph nodes are involved drains are attached to that arm pit area on both sides, for a total of four.  Over the weekend, I was really easing into my routine, drain care, etc. 

One week after my surgery was our 19th anniversary.  Our plan was to go out to dinner, my first journey out to a restaurant.  Our kids were going too, as it was a multiple celebration event.  I truly wanted to get ready on my own.  So once my daughter got home from work, I set to showering independently.  She was close by in our bedroom if I needed a rescue, it took a long time but I was independent for the first time!  Then I continued to do my hair and makeup and get dressed.  All in all, it was about two hours from shower to shoes, but after a week of being my servant I wanted Myron to come home and not have to help me.  I wanted to come out ready for our date.  I did, I was tired and hoped I'd not fall asleep during dinner after doing all that.  We went to Bonefish Grill and then took a little drive since I still felt so good. That was a milestone day!

Next entry: how to help a breast surgery patient

 

SURGERY DAY! Hooray!

When I arrived at the hospital we were early so we sat in the car for a bit, I was not overly excited to be early for THIS event! God has a way of reassuring me through music.  When I made an abrupt job change a few years ago, there was a Christian song (Aaron Shust's "Give Me Words to Speak")  that kept following me in the many days surrounding that crazy time.  During the process of this double mastectomy choice Britt Nicole's song "All This Time" keeps following me: on the radio frequently, popping up on my ipod shuffle.  Low and behold AirOne decided to play it right then and I sat there and cried as I heard the now familiar words that gave me the confidence that He HAD been looking out for me for a long time and today was no different. "All this time from the first tear cry to today's sunrise and every single moment between, you were there you were always there. It was you and I, you've been walking with me all this time." 

So I got that out of my system and walked confidently into the hospital right at 9:28 a.m. We checked in at the surgery desk and I was surprised when they sent me out to sit in the waiting room which my family would spend the rest of the day in. While waiting there, I was blessed with the comfort of social media.  The well wishes were just what I needed to boost my confidence. 

My bag was packed with: 

*a comfy set of pjs to wear home - make sure they have an elastic waist & button up the front to make it easy because you won't be able to lift your hands above your head

*underwear, but no sports bra yet

*toothbrush and toothpaste

* regular meds (BCP)

*face cleanser

*lipgloss & hairband,clips

*phone, charger, and headphones

*picture of my kids

*Bible

*small notebook & pen

*small pillow for ride home

*left my wedding ring at home

After 10 minutes or so, I was called up to answer a few questions and then was taken back to my pre-op area.  It looked a lot like an emergency room to me, curtained off areas for each patient.  Myron helped me bring in my bag, but he was returned to the waiting room until I was set up. My nurse was helpful, but the tone was much more serious.  I placed my clothes in one of those hospital bags and asked for a second one for my sparkly flip flops, trading them in for hospital socks.  After a bathroom break & pregnancy test (yes, that's standard), they strapped coverings on my leg that massage the legs to help deter blood clots.  An IV was started, the anesthesiologist came in and described his portion.  My general surgeon came in to see me and it was so comforting to see a familiar face and hear his calm voice.  He was ready to start nearly an hour early! My parents had not arrived yet from my hometown an hour north.  

My husband was allowed in and the plastic surgeon was contacted and able to join in early but there would be a pre-op delay so I would not lay there waiting under anesthesia (thank you!).  In the waiting time, a friend who works there just happened to check on equipment in that area and stopped in and kept us busy chatting. My parents arrived and were able to come back, followed by my sister and finally one last kiss from Myron.  

They wheeled me out of pre-op, down to the operating room.  I really did not want to see anything..at all..and wondered just how long I'd be awake.  The surgical nurses took over and were nice.  They placed the oxygen over my nose and that was it.  I was out....

My family was very appreciative of the information they received on my progress during the lengthy surgery from the hospital staff. My niece had also come down to spend the day and my cousin came over in the afternoon.  I know it was a long day for all of them and I so appreciate them rearranging their schedules to be there and all their co-workers and sitters who helped make that happen.

The surgeons each came out to chat with them as their portion was over.  Everything was normal in appearance and looked standard.  The tissue would be sent off to pathology and later came back clear. The plastic surgeon was able to halfway fill my expanders due to my excess tissue, 250 mL each, which would reduce my number of follow up fills. 

FIVE HOURS after it began, the surgery was over and successful!  I was so happy to be awake and know it was over.  I was so happy to be alive, that was always a slight risk on my mind.  I was so happy my anesthetic worked, I never knew what was going on and as I recovered I was never sick from the anesthesia.  Thankful for such blessings. 

Mainly, I was NOT in pain.  Some had said it felt like a semi-truck on their chest and was hard to breathe; I felt cautious of how to move but not in pain, more like stiff.  My male nurse was kind and it seemed like I was quickly moved up to my room after I awoke.

The trip to my hospital room was the worst part of the whole experience and that is not much to complain about.  Suddenly I was aware of every groove in the floor as the bed's wheels rolled over the grooves of the door frames and elevator.

My nurse got me settled in my room and I was still flat on my back.  A pump of pain medication was added to my IV so I could control when I wanted meds.  In the early stages, I opted to react before the pain rather than wait for it to come.

My family soon arrived in my room and it was so great to see them!  I don't remember a whole lot, I just felt relieved.  Eventually, I felt hungry since I had not had anything liquid or solid in my stomach all day.  French toast, fruit, water and coffee fit the bill.  I napped a little and my family all headed out for dinner.  

Everybody came back to tell me goodbye before they headed home, bringing me some pretty flowers to brighten my room. We were still undecided on if Myron would spend the night. .  

Moving out of my bed was the biggest obstacle I crossed.  I was ready to get up and brush my teeth, ready to head to the sink, but then I was reminded I had four tubes hanging off me:  the IV, a catheter, and a drainage tube from both sides of my torso. 

My bed sat me upright, but I needed to twist my legs to the side and push myself out of bed while not yanking any cords.  People were there to help with the cords but I was very resistant to pushing myself our of bed.  Push yourself out of your seat, see what muscles you use! It was a slow process but soon I was on my feet, gradually moving to the sink.  

This is when a surprising limitation occurred: I could not push down the soap dispenser far enough to get the soap out.  This continued through my recovery time, always surprising me because there were so many things I COULD do.  The muscle used for that movement must be in your pectorals.  

It was at this time I decided my husband should stay just to help me in and out of bed for any unexpected needs.  My nurse was nice but young and not too equipped with some of the tricks I could have really used for things like getting in and out bed :)

I slept good but was obviously drugged up because when she woke me for my middle of the night vitals, I told her I could not believe I slept all night.  It was not till later I realized it was only 2:30 a.m.! 

I pressed my pain meds to hold it off and went back to sleep, thankful for such a successful day!

Next entry: going home, handy tips & items useful to the patient

The Day Before Surgery

I promised you a blog an update of how my double mastectomy went and it has been 8 weeks tomorrow since this big day and I just now feel strong enough to type this...WRONG! I have felt so great these past 8 weeks, I have had a hard time sitting down to bring myself to do this.

I read a few other blogs where the authors trailed off and quit posting and I wondered, "Was it so bad they could not add to their blog?" Hopefully, they felt as great as I have and just got busy getting back to life.

I promised an update and being in a position recently where I was seeking what it would be like for myself, I owe it to others to follow through on the experience itself.

The day before my surgery- Monday, June 4th- was an incredibly busy day for me.  I had my pre-op visit to the hospital and felt a lot like the days before my children were born, knowing your life is about to take a turn.  It was that kind of nesting feeling and I was motivated to accomplish all kinds of tasks, many that were truly not that important (replace a watch battery?) but I was determined to cross it ALL off my list.

Hospital pre-opt visit
One of the things I enjoyed most about that day was the freedom I had and the ability to drive.  I really did not know how bad I would feel and I knew I'd lose driving privileges for 3 weeks. I did not know the campus of NKC hospital as well as Liberty's so I fumbled around, parking too far away and coming in a delivery door - nice.  I was sent to room where they take your vitals and a blood sample. The greeter gave me a great NKC hospital informational book I could share with my family regarding facilities surgery patients families could use and a map (including where to park!).  

God has blessed me through this process with moments that reassure me He's got my back.  As I sat there reading the booklet, looking at the time I realized they would be well into the surgery this time tomorrow. That made me a little anxious and in walked my nurse, so friendly and caring.  After a brief chat, we realized her children attended the elementary school I teach at and she lives in my community.  It was much more personal and I left with my questions answered and feeling reassured I'd be genuinely cared for.

Before I left the hospital I ventured up to the surgery waiting room, by the check in area, through the gift shop and cafe and out the door we'd all enter in tomorrow.  That is my controling nature, if they'd have let me I'd love to have picked out my hospital room.  I just wanted to visualize where it was all going to shake down, that is reassuring to me.

I grabbed lunch and attempted to complete my ever growing to-do list.  Sonic Diet Coke, trip to Zona Rosa shopping, Target, etc. the busier I was the less I had to think about it. My neighbor dropped by with well wishes and a Subway gift card to keep us fed.  Calls came in from family and friends with well wishes thru the evening, my husband's family picked up our son to spend the night with them and we said goodbye.   I could have sworn it was getting hotter but it was a hot day and I was a bit stressed.  By 9pm we came to grips with the idea that our air conditioner was not working.

It was a hot night and in working with the repair company we arranged a deal that the owner himself (whom we know) would come out to the house since no one would be home on surgery day. I was to take a shower before bed with a special soap to kill bacteria, but was NOT to put on deodorant-GREAT, with no air on a summer night! I could take Tylenol PM but not much was going to help me sleep on this restless night.  Nothing to eat or drink after midnight, so I drank a lot through the evening and had a Nutrigrain bar about 11:50 pm.

I did sleep about 4 hours and when I awoke, knowing I'd never get back to sleep, I lie there adding more from itunes to my surgery playlist.  I bet I spent a lot of $$ in those two hours, I didn't really care, I was staying calm.

I am a big Facebooker and I updated my status that I was feeling very peaceful and confident in my decision that morning.  I was very calm, which I attribute to the many people who said they were praying for me. I was really experiencing that "peace that passes understanding," because this was a day I dreaded!

My thoughts were led to my five generations photo taken in 1994, so I dug it out and posted it as a tribute to the women in my family who had fought the breast and ovarian cancers.  I felt I was making a decision I was lucky to be able to make, in advance...wouldn't my grandmother and great-grandmother be amazed at medical advances!

My daughter left for her job as a nanny, so we said our goodbyes.  I decided packing for the hospital was easier than any trip I had been on and rather liked the simplistic nature.

I was to take another shower with my special soap, but again no deodorant! and no make up. I was told to wear comfy clothes, so I wore a bright pink workout shirt and coordinating capris my mom gave me with my sparkly flip flops.  No jewelry, but I had to wear in some earrings and my cross necklace and would take it off later.

I was actually ready early and piddled around the house and with my outdoor plants.  Myron said a prayer and we hugged and cried a bit and headed out the door.  The happiest part of that was knowing that when I returned it would all be over.

Next entry: surgery and the hospital stay

Pouring Summer Fun Into a Few Days

So there are times when I wonder why I am choosing to do this procedure.  I envision pain, possible complications, etc. I have a very strong faith and God keeps putting people and messages in front of me that add to my certainty that I should proceed.

I have talked with breast cancer survivors and from Facebook watched the reality of one who passed away last month.  I keep promoting the fact that I have insurance, I have the summer off, my husband is home from his duties at the Missouri capitol as a state representative, our daughter can drive, our son is turning 12 and quite self-sufficient. I hear stories of single moms with breast cancer traveling out of state and I am reminded, "this is a piece of cake!" I CAN do this, I SHOULD do this.

My niece-in-law who is a nurse reminded me it feels much better to handle cancer than let cancer handle you.

Will it slow me down? YES! and everybody I know thinks that is good.  I run full force, from event to event.  I love the thrill of "making it!" and this will truly teach me the true meaning of the word "patient."  It is campaign season for Myron and we'll skip a family vacation this year, but I remind myself that in one year I'll be on our second Disney cruise this time with my parents, sister and her family.  Surely by then I'll see this as a distant memory one year ago.....

We wrapped up the school year on May 23 and I have tried to pour a lot of summer into these few free days.  We headed to my parents vacation home in Branson for dips in the pool, lake, and all the roller coaster rides at Silver Dollar City  I could handle.  We went to the Royals game and I have stocked up on household goods, a recliner, and plenty of cute button up the front shirts.  I made a playlist for surgery and have taken note to how much I really do extend my arms - yikes!

My mom has been super supportive with her first-hand knowledge of the procedure, yet time and purpose will separate our experiences so I can't count on it all to be the same.  We've decided it is much like childbirth, everybody has a different story.

I wanted to start this blog as I found few recent perspectives on the procedure.  Mitchell has been so helpful to get this all set up for me and I have spent quite a bit of time on here recapping the last nine months.  So I'll sign off for now so I can go due some things I won't be able to do temporarily.

Surgery is Tuesday at 11:30; say a little prayer for me, my surgeons and caregivers, including the ones who will have to put up with me at home.  Aftercare sounds very busy, but we'll save that for next time.

Meeting with the Surgeons

So you may be wondering what my husband has been saying about all this.  He has been super supportive of me and practically insists that I have the surgery.  He feels it is the best option and supports my decision to do some radical things to my body.  We have joked a ton about the "boob" part of it and he is a bit excited to see the new ones-he he! He has attended all of my major appointments, which is so great to have another set of ears, as sometimes I may hear what I want to.

In November we met with the general surgeon who will do the procedure at North Kansas City Hospital.  He is quiet, gentle and very precise in his manner of speaking, which I hope is the same for his surgical manner.  He had just returned from an out-of-state breast cancer convention and enlightened us with some of the new information he learned.  He too assured me the mastectomy was the state-of-the-art prescription for BRACA carriers.  I wanted to make sure I was not just some kind of lab rat they could test, but I came to realize for the few of us that carry a family history and the fewer that will take the test and even fewer that do something about it...well, this IS what you do.  It just seems so radical, I wanted to be sure.

We discussed nipple sparing, the procedure to preserve the nipple but that contributes to continued cancer risk, so I am opting out of that, they will take the entire breast.  We talked about surgery in general, risks, scheduling time frames, plastic surgeons, etc.  I was convinced he knew what he was doing and thankful that this is not something that involves any of my major organs.

Over my spring break in March, we met with the plastic surgeon and this was where the fun really began.  He, too, convinced me this was such a wise choice and told me about how he would help me get the results I wanted.  I was actually very excited about the chance to lessen the size of my breasts, as I am convinced they led to some of my recent back issues.  His professional, yet down to earth nature, made this final portion more of a celebration.  In addition, I love his nursing assistant and the can-do attitude they have about this process.  I have been blessed to have such great care givers.

My mom did not have reconstruction, so this is a new territory for our family.  There are three options for tissue replacement: back tissue if you are having radiation (I am not, of course), tram flap from your abdomen (risky when doing both breasts, as I am), or expanders with a later implant. BINGO! that will have to work for me.

The general surgeon will take about 2 hours to remove the breasts, then the plastic surgeon will place expanders in, which will later be replaced with implants. The entire surgery will take 3-4 hours to complete and they will send me home the next day with drainage tubes to maintain for a week to 4 weeks! No driving for 2-3 weeks.  No lakes, etc.  Just lots of relaxing and 10 minutes of walking an hour, no extreme bed rest because as the doctor reminded me, "You are not sick!"

A month after surgery, they will begin to fill the expanders to stretch the skin into breast mounds.  When I reach a size we are all comfortable with, I'll have an outpatient surgery to put in the permanent implants.  There will also be nipple reconstruction and later tattooing to replace the areola; so I'll have tattoos!! That is a first for me - ha!

At the end of spring break, Myron and I took a trip to Vegas, just the two of us.  We had a ton of fun and lived it up for a few days.  On the way home, we picked up the mail and received news my surgery had been approved by my insurance.  A bittersweet moment: so happy to have it covered but now it was real and going to happen!

During April, the surgery date was set for June 5th allowing me some time to do a few summer things after school was out.

Next post:  final preparations and convictions

Treatment Options for BRACA Gene Carriers

So I chewed on the fact that I had the gene for breast and ovarian cancer.  Being a teacher, my principal was the first person I saw when I returned to school from the results meeting.  From his office, he motioned a questioning thumbs up-thumbs down sign, which has symbolized my results all along:  thumbs down that I carry it, but thumbs up that I know and can do something about it.  How many other women would love to be able to find out their potential risk?  MANY, based on the conversations I have had the past nine months.

My mom felt bad, but I told her I had inherited many great genes too.  :) I knew just how she felt, having a daughter myself - and a son, because breast cancer does affect males too!  Currently, my sister and female cousin have not taken the gene test but they are younger and can watch my progress.

My gynecologist referred me to the University of Kansas Cancer Center, which has locations all across the Kansas City metro area.  I was assigned a female oncologist that specializes in hereditary cancers. I've never had a doctor spend so much time with me, of course I have always been very healthy too.  With my husband there, we talked about the potential risks of both ovarian and breast cancer and my options to reduce the risk.

I have to say, just one visit to the Kansas City Cancer Center KCCancerCenter.com helped me make my mind up that I was going to follow through on whatever it took to reduce my chances of developing cancer.  A waiting room full of people ready for chemo is just the trick to make you think about your own path.  I felt safe back at my gynecologist's office where I took the test and received the results; now I was looking cancer in the face - literally.  I tossed my shoulder length hair around as they placed a hospital-style bracelet on my arm.  I wanted to declare "I don't have cancer, this is my real hair and I intend to keep it!"

During that October visit, the oncologist mapped out my family tree and talked about the importance of my sister and our children being tested for the gene.  The good thing is they can specifically look for the genetic marker they found in me, rather than doing the extensive review that was done on my blood sample.  That reduces the cost to about $300 per test.  They would like to test my daughter when she is 18. My sister and my children have a 50% chance of having the gene since their parent does, but like me they will have to decide if they want to know if they are carriers.

The best way to lower my risk of breast cancer  is to have a mastectomy; lowering my risk more than 90%!  In addition to the gene, I have plenty of dense, breast tissue which makes routine screening even more difficult.  I decided to have the surgery early in summer break, so I would have several weeks to recooperate.

To reduce ovarian cancer, the best option is to have a hysterectomy, however for a pre-menopausal woman like myself, you must have the mastectomy first due to hormones. Darn! I was really ready to do that less invasive one first at my local hospital with a physician I knew well, but that was not to be.

In the meantime, my doctor set me up with a screening plan that would be similar for a gene carrier who is wanting to still have children or for whatever reason is waiting to do surgery, etc.  Monthly self exams, quarterly office visits for breast exams by a physician, yearly mammograms, and yearly MRIs- six months after the mammogram.  For ovarian risks, pelvic ultra sounds and the CA125 blood test are given every six months.  These roll around faster than you think and for someone who is not used to doctor visits, I could not see myself continuing this pattern the rest of my life if I had a choice.

My oncologist referred me to a surgeon and plastic surgeon, as I was interested in having reconstructive surgery.  She set up a plan to see me again in three months and gave me plenty of information to share with the rest of my family.  More than anything she assured me this was the BEST option for addressing my risk, especially since we were done having children. This was so reassuring because my regular MD had been so critical, but it would be the endorsements of the surgeons that would convince me this was so doable for me.

Next post: visits with the general and plastic surgeon   

Family History and Testing

How did I know I carry the breast/ovarian cancer gene?  A genetic test, done through a blood sample in September 2011, started the ball rolling for me. The reason why I was tested began many years ago.

My maternal grandmother was diagnosed with stage 4 ovarian cancer in 1989 at the age 61, my freshman year of college.  An amazing fighter, she lived an unheard of 11 years with the disease and was able to see three granddaughters marry and meet both of my children.  She never had breast cancer, but she was a cheerful advocate for the power of prayer and positive thinking when it came to ovarian cancer treatment.

Breast cancer hit closer to home when a mammogram found spots in both of my mother's breasts in the fall of 2008.  She had a double mastectomy, followed by chemotherapy and I am thrilled to say she is doing great now!  She took the genetic test following her diagnosis to see if she carried the BRACA gene and since it was positive she elected to also have a hysterectomy. She did not opt for breast reconstruction since she was going through so many other treatments.

When my gynecologist learned of my mother's history, she encouraged me to have the genetic test myself to see if I was at a higher risk for having breast or ovarian cancer.  I knew I wanted to do it, but working full time and being in graduate school and with my husband on the campaign trail for state representative I knew there was no way I was going to take any surgical precautionary efforts at that busy time even if my results came back positive.  I did however start yearly mammograms at that time (age 37).

This fall when I was in for my yearly exam, the testing topic came up again.  Knowing I was not getting any younger (40), I decided to go ahead and have it.  It is a simple blood test, but it can cost over $3000; thankfully my insurance covered it.

It came back two weeks later; positive for a deleterious mutation BRACA 2, the kind that does not hit women as early in life and is not as fast growing.  That was the good part.  Not all gene carriers will develop cancer and vice-versa not all cancer patients carry the gene.  Carrying the gene means I have a 45-84% chance of developing breast cancer by age 70, as compared to the general popultaions risk of  8% and a 27% risk of ovarian cancer compared to a less than 1% chance for the general population.

So that makes you stop and think...

Before you take the test they counsel you and ask if you know what you might do depending on the results.  In some ways they encourage you not to take it if you are not going to do anything about it.  I knew my Nanny would tell me, "Cam, if there is some thing you can do to change your path -do it!"  She did not have that luxury 20 years ago, I could not let the opportunity pass me by.

A note about insurance and genetic discrimination: My regular family physician had a fit about my taking of the test when I was in to see her for back problems last fall.  This totally surprised me as she harshly informed me I would never get insurance again (FALSE), etc.  It was the first time I ever talked back to a physician as she critically asked me why I would ever do such a thing, telling her because I had seen family members fight their way through cancer.  It made me really question my choice for testing, but using her logic did I want to have insurance to eventually cover my cancer or reduce the risk of it in the first place? In truth, the federal law HIPAA protects your results from determining your insurance eligibility & rates and most states have genetic discrimination laws. Really, wouldn't an insurance company rather reduce your risk up front than paying to spend years in treatment and surgery.  I don't think I can return to her as I trust my physicians to be up to date on the most current practices and laws.

My next post will talk about state-of-the-art treatment for BRACA gene carriers.