Tuesday, March 29, 2011

UPDATE ON MY RECOVERY AND PLANS

Well, I am over two weeks out from my surgery and I am doing great.  This has really gone easier than I thought it would. All of the prayers and support has really made a difference. One other huge blessing is I have not had ANY menopause symptoms to date! I really cant believe that.  I had fully prepared my mind that I was going to experience hot flashes, irritability and other symptoms since all of my doctors told me I would immediately go into menopause and would experience symptoms within hours, days and at the most weeks of my surgery, but that has not happened. I know it could happen in the future, but for now I am encouraged that I have not had any symptoms and that maybe menopause will not be as bad as I have heard....we will see.

I have my post op appointment with Dr. Hall, my gynocological oncologist this week and I cant wait to report how well I am doing.  He is going to be super impressed! I do still  have to take it easy on lifting things.  I have violated the "nothing over 2 pounds" rule a few times because I mean, come on, a gallon of milk weighs more than that so how am I going to pour myself or my girls a glass of milk? I have taken it easy on the lifting, allowing other people to pick up things for me at the store and I have not fed or watered the dogs since my surgery.  I really like that restriction, but dont tell Nate!!! I have also had to take it slow with walking.  If I walk too fast or too long, I have some spotting.  Nothing major.  That has been a little discouraging because I LOVE to exercise and usually work out about five to seven hours per week.  I cant do any weight lifting and I have not been able to jog or take my biking class.  I am back up to walking at a moderate pace for 30 minutes at a time. Today, I took two, 30 minute walks and was fine. So, I am making progress. 

I also have felt like myself for over a week now, which encourages me greatly and helps me have a happy attitude about this whole thing. That was one of my greatest fears that I would not feel like myself and be able to be the best wife, mother, social worker, etc.  But, that has not happened and I am going to continue to think positively that it is not. 

I have also made progress this week on my breast cancer risk.  As I have said earlier, I have decided to have a bilateral, preventative mastectomy to reduce my 87 % chance of breast cancer to as close to zero percent as I can get it.  I told me surgeon two weeks ago to go ahead and schedule my surgery and that I wanted to have it as early in May of this year as possible.   The reason for this request is just the timing of my family's schedule and my work schedule. Nathan is leaving at the end of May for his mission trip to Kenya when he is taking over 60 people!!! He also has many weeks after he gets back that he will be speaking at various summer camps, so I wanted to have this surgery behind us before his summer kicks off.  Also, the girls get out for summer break on June 9th and I wanted to be fully recovered by that time to not take away from their summertime schedule. I want to keep their world as normal as possible.  My oldest daughter, who is 10 years old, has had nightmares and other sleep disturbances since 3 weeks before my first surgery.  She is still having some of them, but since he surgery, it is definitely less.  But, I am anticipating more anxiety from her as I have this second surgery.  I want these surgeries over for them too.  I do not like to see them be anxious about anything.

So, back to the surgery scheduling...I was really discouraged when I called my surgeon's office a week after I requested the surgery to be scheduled and the insurance verification nurse stated she had not even called my insurance company yet! UGH!!!!! To add to this, I asked her if it looked possible for me to have my surgery in May and she said that Dr. Robinson's schedule is all booked up for May! This was NOT what I was told at my appointment.  I was really discouraged by this and then when I asked her how long that it would take to get the verification, she said it would take another week.  My spirit just sank at that point.  Those of you that know me, know that I am a planner.  If I have a plan, I can cope with just about anything.  If I dont have a plan, then I feel lost and out of focus.  This also makes me extremely sad and down, which is hard for me because I like being a positive person. But, all I could do was wait and pray for a miracle.   After I waited for another week, I called the insurance nurse last Tuesday to ask about the insurance verification.  She told me that my insurance had approved my surgery (thank you God!) and that the surgery scheduler would call me as soon as the surgery was scheduled.  I really anticipated that it would take another week to get the surgery scheduled especially since the surgery will have two surgeons-Dr. Flippo-the breast oncologist who will remove my breasts and the Dr. Robinson who will do the reconstruction part. I also knew that the longer it took to get the surgery scheduled, the less likely I was going to get the surgery done in May. 

The next day, I had a breast MRI scheduled.  I have never had an MRI for anything so this was a new experience for me.  It was not at all painful.  You just have to lay completely still for about 20 minutes while this LOUD machine checks you out.  I was a little nervous that the MRI would show some type of abnormality. I had been reading that first breast MRIs have a higher rate of showing something abnormal.  I knew the doctor would call me personally in the afternoon to tell me my results. So, about 2 pm, my radiologist, Dr. Gromet, called me and told me that my breast MRI was completely normal! Yahoo!!!! While on the phone with him, my surgeon's office called and left a message.  I called back and was told by the surgery scheduler that my surgery was scheduled for May 5th! I literally cried on the phone to this person and thanked her over and over again.  I could not believe that my surgery was scheduled so fast and for the exact timing that I had prayed for!  After the phone conversation and those two pieces of such wonderful news, I found myself all alone in my house, even though my kids and my husband were home, but enjoying the beautiful weather outside.  I just fell to my knees and thanked God for his provisions he has sent to me.  He has provided for me all the way during this journey and I am so thankful!

So, I am preparing for the upcoming months and feel very encouraged that I am going to beat these potentionally deadly odds that have been passed down to me.  I am going to "previve" cancer and live to support others who may have this same journey. 

Levacy

Thursday, March 17, 2011

Hysterectomy/Salpingo-Oopherectomy is done and I am recovering!

Well, it has been 6 days since I have a total hysterectomy/salpingo-oopherectomy to reduce my risk of ovarian cancer and I have to say, that everything has gone better than I expected it to! Praise the Lord!

As I have written before, I was very anxious for the few days leading up to the surgery and the only thing that helped me was staying busy! It was only when I had nothing to do, that I began to think about it and get anxious. 

To those of you who are interested in a recap of my surgery and recovery, here it is.  I was so glad that I was Dr. Hall's first surgery of the day on March 11th even though Nathan and I had to be at CMC at 5:30 AM! My parents spent the night with us and took care of the girls after we left.  My parents prayed with me before I went to bed on Thursday night and when I went to kiss the girls goodbye on Friday morning, Sophie had slept with a picture of me and had written me a note to tell me she loved me.  So sweet! We made it to CMC in like 20 minutes because there was absolutely NO traffic at that time of the morning.  We checked in with 4 other patients there for various surgeries.  There was this huge waiting room we were put in with about 20 people and I thought, "this is going to take forever", but they took me back, without Nathan, within about 10 minutes.  The pre-op process went well and I had a wonderful nurse that took care of me.  After she prepped me, Nathan was allowed to come sit with me.  We were introduced to my anesthesiologist, who my friend, Richard, who is also an anesthesiologist, picked out for me and we also met my nurse anesthetist.  They were wonderful as well and took extra special care of me.  Everyone kept saying that Dr. Hall may or may not come by to see you before the surgery.  They referred to him as "the captain of the ship" because he has been a gynecological oncologist for like over 30 years and he has teams of residents and interns that work under him.  The fact that he was so experienced really made me feel at ease about having him perform my surgery.  He did come by to say hello to me before the surgery with one of his residents and after a few minutes, it was time to go.  Nathan prayed for me and I got a little teary, but after saying goodbye to Nathan, we were rolling down the hall to surgery.  I remember going into the operating room and how big it was with lots of large pieces of equipment with many different colored lights, but that is all I remember until I woke up.  The surgery took a little less than 2 hours (just like Dr. Hall had said) and he went out to tell Nathan and my mom, who had gotten there by then, that everything was fine.  Our good friend, John G., also came up to the hospital to bring Nathan a biscuit and sit with him, which was so nice.  I also had a wonderful post op nurse who took care of me and it was a good thing because I had to sit in post op for almost 4 hours due to the fact there was no rooms available for me until about 2 pm that afternoon! I slept off and on for about an hour or so in post op, but when I woke up, the nurse let Nathan and my mom come back to stand with me.  It was great to see them.  I also called the girls' school and talked to both Gracie and Sophie to reassure them that the surgery was over and that I was okay.  I really did not have any pain after the surgery, but my stomach was sore from the 5 "bullet holes" I have from the laproscopic surgery.  It is truly amazing that they can perform this surgery laproscopically instead of through a large incision in your abdomen.  It cuts the recovery time down from months to days. Nathan and my mom kept me entertained in post op, along with all of the nurses there.  One of the nurses even gave them something to eat and Nathan kept telling stories (as he is so good at) to various staff and talked to one nurse about golden retrievers and dog breeding.  Nathan and my mom both stood beside my bed for the 3 plus hours, which really did not feel much longer than about 20 minutes to me, until they moved me to a regular room.  The post op nurse was nice to go ahead and take out my catheter as well.  Once in my new room, the nurse came in and said she was very surprised to see how well I was doing.  I was alert, talking on the cell phone to a friend and was ready to get out of bed and use the bathroom.  It did take me a few hours until my bladder woke up and I could pee, but after that happened, I was ready to go home.  Dr. Hall came back to check up on me with his residents (I think he usually just sends his residents, but gave me some extra care by checking on my personally).  He confirmed with me that the surgery went perfectly and that he had already checked out my uterus, cervix, fallopian tubes and ovaries and that they all looked normal to him.  PTL!!! The hospital had already done an official pathology report on my uterus and cervix by that time, which showed everything was normal, and Dr. Hall had prepared and sent off my ovaries and Fallopian tubes for an official pathology report, which he will have back by the time of my post surgery appointment with him in a few weeks.  Even though I could have stayed one night in the hospital, Dr. Hall said that I looked so good, that if I wanted to go home, I could.  So, he sent me home.  Yeah!!!! It took a few hours for them to discharge me, but we got home about 7:30 that night and after taking a quick shower, I went straight to bed.  I did take one pain pill that night and I think it helped me sleep all night.  The next two days, I was sore, but had no pain really.  I did not take any more pain medication, but did take Advil regularly.  It was so nice to see my girls again that next day.  They each had spent the night with a friend and their families had made it a special night for them.  I have been taking it easy over the last 6 days. Nathan took care of me on Saturday and part of Sunday, but then he had to go out of town for work in Texas.  My mom and dad essentially moved in after he left and have been taking care of me all week.  Really, they did not have to take care of me too much, just mainly helping me take care of my girls.  After the first two days, I don't have any more soreness and no pain at all.  I have started to walk and I can even work some now-from my couch. Since I had a full hysterectomy, my doctors have been able to put me on a low dose estrogen patch to alleviate or minimize any menopause symptoms.  They all say that you have similar symptoms of menopause that your mother did.  My mom has been through menopause, but had very few symptoms.  She does keep her house cooler than she used to so she does not get hot at night, but really did not have any other symptoms.  Surgical menopause is different than gradual menopause and because of my age, all of the doctors told me that I could have menopause symptoms within hours or days of the surgery and at the most a few weeks. To date, I have had no symptoms of menopause, but I am still waiting for menopause to strike me.  We'll see how that goes.....

There have been so many blessings during this entire process.  The two main things I was worried about-not waking up from the surgery and the doctors already finding abnormalities in one of my female organs are no longer worries for me.  I did survive the surgery, it went perfectly without any pain or problems and none of my female organs were already affected with any abnormal cells! I also have the huge weight of possible ovarian cancer lifted off of me because I have reduced my risk down to as close to zero percent as humanly possible. An unexpected relief for me has been that I am not as anxious about my future surgery to reduce my breast cancer risk because this one has gone so well.  Some of the greatest blessings from this experience has been all of the prayer support from my closest family and friends to acquaintances within our community to people whom I have never met, but know of me through someone else.  Their prayers were heard and answered! I have also received overwehlming support from family and friends through cards, phone calls, emails, visits, flowers and food for my family that has all helped ease my recovery.  I cant say enough about what a huge blessing it was that two of my closest friends (with daughters the same age as mine) kept one of my girls for the day and night that I had the surgery.  It was such a relief to know that they were being well taken care of and having a blast at an extra special sleepover! Another huge relief has been another friend who has taken care of our dogs for the few days that Nathan has been out of town because I would not be capable of doing it right now. 

If I had to share the hardest aspects of this experience, it would be (I know this is gross, but it really was the most difficult thing for me) the bowel prep I had to endure for the 24 hours leading up to my surgery and then the restrictions of no lifting anything over 3 pounds for 6 weeks! You dont realize how much stuff weighs until you are not supposed to lift anything over 3 pounds.  I did not think about how I am going to go to the grocery store or take a bucket of water to our dogs or even lifting a gallon of milk out of the fridge.  I cant do any of that on my own. But, I have tremendous support and know that I will get through the rest of my recovery well.

I want to end today with one of my favorite scriptures about prayer because I really am the most grateful for all of the prayers that were said on my behalf and the fact that my heavenly father heard those prayers, protected and guided my through this experience and gave me a peace that he will always be there with me. 

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4:6-7)

Thursday, March 10, 2011

Tomorrow I will officially become a previvor!

Well, tomorrow is the day that I officially become a previvor of cancer! I have a lot of mixed emotions thinking about the surgery I will undergo to get rid of all of my female organs and reduce my BRCA 1 risk of ovarian cancer down to as close to zero as humanly possible.  I am anxious about a few things-complications from the surgery, the surgeon finding cancer in my ovaries once they are removed and then not feeling like myself as I enter the world of surgical menopause. I feel like I have prepared myself as much as possible for all of this and my mind and body are ready.  Things that have helped ease my anxiety have been cards of encouragement from friends and family, phone calls, visits and words of encouragement from my husband, family and friends.  So many people have offered to help with my children and bring our family meals during my recovery! It has been amazing! The emotional support I have is overwhelming and a true blessing to me during this time in my life!

Above all, my faith in my God has been the greatest source of spiritual strength during this time for me.  I know that God will see me and my family through this circumstance! I have been relying on several scriptures this week that I want to end with today:

Psalm 27:1
 The LORD is my light and my salvation—
whom shall I fear?
The LORD is the stronghold of my life—
of whom shall I be afraid? 


Isaiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Psalm 42:5

Why, my soul, are you downcast?
   Why so disturbed within me?
Put your hope in God,
   for I will yet praise him,
   my Savior and my God

Psalm 42:8

By day the LORD directs his love,
   at night his song is with me—
   a prayer to the God of my life.


Levacy   

Friday, March 4, 2011

1 week til Hysterectomy/oopherectomy

Weill, this time next Friday my hysterectomy/oopherectomy should be complete and I will officially be "post menopausal."  I am excited and anxious to have this surgery behind me.  I feel 100% certain that I have made the right decision about this surgery and feel really good about moving forward. I met with Dr. James Hall from the Blumenthal Cancer Center for my pre-op appointment last week.  Let me just say that I love Dr. Hall!  He is quite a character with his "harry potter" glasses and his colorful bow ties.  He has a sense about him that he seriously knows what he is doing and that everything is going to fine.  He also has a wonderful personality and takes the time to really talk to you.  He told me during my appointment last week that "He and I were going to do this little dance together and that I was going to be just fine." And, not exactly sure why, but I believe him.  Everyone who knows Dr. Hall professionally or has been one of his patients, feels the same way about him.  He answered all of my questions and confirmed that he will be removing my ovaries, fallopian tubes, uterus and cervix.  I will keep my vagina in its entirety.  I am Dr. Hall's first surgery next Friday and have to be at CMC at 5:30! I am super happy about that because I do better first thing in the morning, so I just assume everyone else does too! Dr. Hall stated that the surgery will start at 7:30 and will take 2 hours.  It will be done laproscopically and the organs will be removed through my vagina (like a baby).  He will cut my cervix from my vagina and sew me up.  He said that I will be under general anesthesia and when he comes by to check on my in the afternoon, if I am doing well, I can go home! My good friend, Richard, who is an anesthesiologist at CMC, has checked on who is going to be my anesthesiologist that day and stated that he would trust the one assigned to me to put his wife or children under, so I also feel good about that.  The only thing I was kind of surprised about was that even though this surgery should be way easier than my mastectomy surgery, I can not have a bath or swim for 6 weeks and I can not lift anything over 2 pounds for six weeks either.  There are risks of infection and hernias.  He does not want me to run or bike either.  That is seriously going to cramp my regular exercise routine, but I am grateful that it is getting warmer and I can go for as many walks as I want!

One thing I have been very anxious about was the changes I am going to undergo entering surgical menopause at my age.  I have read all of the symptoms of menopause and none of them are good, except that I will have no more periods!!!! Because I felt this way, I went ahead and saw a menopause specialist prior to my surgery.  My appointment was yesterday with Dr. McLoughlin from the REACH fertility clinic in Charlotte.  My mother came with me to this appointment.  I was not quite sure about going to the REACH clinic for my menopause appointment because all I kept thinking was that I was going to be waiting in the lobby with all of these women my age who are there trying to get pregnant and then I was going to be called back to see menopause doctor.  To keep myself from feeling too anxious about this, I really just had to smile.  I was pleasantly surprised that the menopause clinic was on a separate floor from the fertility clinic so Mom and I had the waiting room to ourselves since we arrived so early for the appointment.  I could not help but laugh a few times when we were in the waiting room and the office assistant and lab technician kept looking at my mother and asking her questions like, "Do you need to have lab work done."  Or, "The doctor will be with you in a minute."  They thought SHE was the patient since she was more of the appropriate age to be seeing a menopause doctor!

I was SUPER impressed with Dr. McLoughlin, the menopause specialist, for several reasons.  I was her first appointment for that day and when she came in to her office through the waiting room, she stopped and said to me, "You must be Levacy, my new patient today...I have already read your records."  Already, from that first encounter with her, I knew that she was going to be personable and prepared, two characteristics I admire greatly in others.  Another reason I was impressed with her was that when I went back to her office, she talked with me for over 1 1/2 hours!  I could not believe it! I was mentally exhausted after the meeting, but I felt that she told me everything I needed to know in preparation for menopause.  Among other things, she took the time to explain to me exactly what a hot flash was and what the different options I had for estrogen therapy, which range from creams, mists and pills.  She informed me of long term studies of women who have entered menopause and had hormone replacement therapy like I am going to have.  She assured me that going on a low dose estrogen supplement was going to decrease the frequency and intensity of all of my menopause symptoms and that going on estrogen only has not been proven to increase breast cancer risk! She confirmed that if I kept my uterus and cervix, I would have to go on progesterone too and that could increase my already 87% chance of breast cancer.  So, no thank you to that! She also stated that I will not be able to replace the testosterone that I am going to lose with my ovaries because the FDA has not approved testosterone for women in menopause.  There is a HUGE need for specific studies on BRCA mutation carriers and the long term effects of surgery in relation to their cancer risk and the effects of long term hormone replacement therapy.  Since these gene mutations were only identified 15 years ago and testing for them really has only been in larger numbers within the last few years, there are not that many studies.  I have never been one to join a scientific study, but I have entered a study through the University of Toronto on the effects of a decision aid on a BRCA mutation carrier's decision making process.  I hope to enter additional studies to make the science more accurate for future mutation carriers. 

In addition to all of this information that she gave me, Dr. McLoughlin also spent the time to ask me about how I came to my decision and what my concerns were.  She seemed very interested in a patient like me because she said there are just not that many of us out there.  She said she has probably seen about 20 BRCA mutation carriers like me in her practice.  Even though I feel really good about having the surgery, one thing that I am anxious about is not feeling like myself post menopause.  I am worried that I will not be able to fulfill all of my roles as a wife, mother, social worker, piano teacher, friend etc etc.  She did tell me that I will never be the exact same again, but that I would have a "new normal."  That was difficult to hear, but I am appreciative that Dr. McLoughlin was honest with me.  She told me that I need to focus on me this year and my physical and mental health.  She told me that I needed to simplify my life and things that I do not have to do, to stop doing.  That was hard advice to hear and will be even harder for someone like me to do, but I think she is right.  I also shared with Dr. McLoughlin that I have sensed some anxiety from my children about the upcoming surgery.  Nathan and I have been honest with the girls about what is going on.  I never want to lie to them and keeping something from them is lying to them in my opinion.  I have been very direct and positive about this explaining that I am having these surgeries to prevent getting cancer.  I believe that Gracie understands more what is going on than Sophie because of her age and personality. Most things just sail over Sophie's head, which is a lot like I was as a child.  Gracie internalizes things and thinks about things.  I have noticed that she has had more anxiety over this within the last week.  This make me extremely sad, but I have to keep telling myself that it could be much worse. If I wait around and get one of these cancers, then the anxiety level for me and my family would be exponentially greater and I do not want that to happen. 

I feel very grateful for the medical professionals-Dr. Hall, Dr. McLoughlin and many others that I will hopefully share about later.  I consider it one of the greatest blessings during this process so far to be under the case of doctors so skilled in their area.  I really feel that this is just one way God is taking care of me as one of his children.  Sensing God's presence and provisions during each step of this process reminds me of one of David's songs in the Bible. Psalms 139:1-11

You have searched me, LORD,
   and you know me.
2 You know when I sit and when I rise;
   you perceive my thoughts from afar.
3 You discern my going out and my lying down;
   you are familiar with all my ways.
4 Before a word is on my tongue
   you, LORD, know it completely.
5 You hem me in behind and before,
   and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
   too lofty for me to attain.
 7 Where can I go from your Spirit?
   Where can I flee from your presence?
8 If I go up to the heavens, you are there;
   if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
   if I settle on the far side of the sea,
10 even there your hand will guide me,
   your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
   and the light become night around me.”

With God on my side, I am ready for what is ahead.

Levacy