Lymphedema

March is lymphedema awareness month.  This is my story and my opinions.  Lymphedema is different for all patients.  I have never heard of the word lymphedema until the doctor was discussing it with me prior to my double mastectomy.  I now define it as swelling and fluid buildup in affected extremities.  The doctor let me know that if she needed to remove any lymph nodes that could cause lymphedema.  Of course, I went home and researched what lymphedema was.  It was one of my main concerns going into the double mastectomy.  The first thing I asked when in the recovery room was if they took my lymph nodes out.  I found out later that I had 10 lymph nodes removed.  I already knew it that was a definite possibility since I had found my cancer by feeling a lump under my armpit. Please remember the lymph nodes area under your armpit when doing your monthly breast exam. What I  did not know is how lymphedema  would affect my life from that point forward. Most people don’t even notice my lymphedema until I let them know.  I notice it by the heaviness and swelling.  Some days that arm may be swollen and the sleeve of my shirt will be so tight.  I cannot have blood pressure or blood drawn from that arm.  I can’t wear sleeves that are elastic on that arm.

Lymphedema is a chronic  condition.  My first lymphedema scare was a couple of days after my surgery.   My sister and I took Coco for a walk. While walking, another dog came running out. I accidentally held onto the leash instead of the handle. This resulted in a cut on my hand. The first thing I thought was that was stupid.  The second thing I thought was unexpected.  I had cut the same left hand which had lymphedema.  I didn’t know what to do. Of course my mind went to the worst case pictures, that I’ve seen the table they got infections due to lymphedema.   At first we thought about going to the emergency room, but instead we called the on-call doctor. He wrote me a prescription for an antibiotic to make sure I didn’t get infection. Now, these days I’m not overly cautious as I was then.  I just make sure to monitor any cuts or bruises for signs of infection.

The cancer center help me get an appointment with the lymphedema doctor. He was the first doctor there for lymphedema.   He was just a resident. I think I knew about as much about lymphedema is he did just by doing just my research.  He helped make an appointment with the lymphedema  physical therapist.   I went through several months of physical therapy learning manual lymphatic massages , exercises, and several other techniques.  I have to go back to the physical therapist periodically when my arm swells too much.

Over the course of years, I have learned some of the things that can cause a flare-ups.  For example for me, staying outside in the sun for extended periods of time, over use of my left arm, and too much salt can cause my arm to swell more.  What I believe is important is monitoring and controlling my lymphedema. I wear a compression sleeve daily and do manual lymphatic massage daily. I also tried night wrapping but that did not help me.

Lymphedema medical options have increased from lymph node transfer, lymph  node  bypass, and performing lymph node bypass during mastectomy and lumpectomies.   Lymphedema is getting more attention in recent years due to exposure by stars such as Kathy Bates,  Hillary Swank, Joan Lunden and many other lymphedema patients. Now, most surgical oncologists are sending patients that have any lymph nodes removed for a physical therapy evaluation.

For additional information about the options available,

http://www.cancercenter.com/treatments/lymphedema-surgical-options/

God is with us in our times of pain and need.  Keep your faith in God!  It is easier during good times but we must remember to do something the same during bad times well.

Romans 8:17-18 And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering. Yet what we suffer now is nothing compared to the glory he will reveal to us later.

Emotional Side of Cancer

Anyone who knows anyone going through cancer or who has gone through cancer treatment knows that everything isn’t always easy.  I know that my fellow cancer survivors will be able to relate to all this.  Usually, I have very positive attitude and find the good in most things.  Even though I have rough times,  I choose to concentrate on the good things and my faith.

This has been a rough week for me. I’m not sure if it’s the time change, Faslodex chemo injection, ibrance oral chemo, frank talk with my doctor, or some negative information about metastatic breast cancer.   I could blame it on the time change but I know that there were other things too.

It started with the time change on Sunday. Then, trying to get the timing right for my chemo medicine at night. It seems if I take it too early then I’m wide-awake all night. If I take it too late, then I’m really tired in the morning.   I’ve got suggestions from fellow cancer survivors  and my doctor. I know that night is best it’s just a matter of coming up with what time is the best time to take it. Chemo is just so different for each person.  I’ve only been taking it for a week so I have to give myself some time to get used to it.  I thought for some reason thought oral chemo would be easier than the IV chemo.  Not really,  with IV chemo it was either once a week or every other week. Everyday is a whole different ordeal.

I left for my injection  on Monday.  That involves another time change and just flying and waiting.  Got my Faslodex injection on Tuesday.  I seem to hurt worse than it did last time.  The doctor told me that I could no longer get my Xgeva injection because of my jaw issue.  Then,  I asked him some questions about the Faslodex.  Like how long am I going to have to take this.  For long as it’s working, then we will try something else when that stops working.  Ok, so already I can see now I was allowing negative thoughts to set in.  Came home that day.

All week it seems like I saw negative information about metastatic breast cancer.  So again,  I was allowing myself to concentrate on the negative.

It all came to a boiling point when Steve and I were putting up clothes yesterday.  I out of nowhere just started crying.  That is very unlike me.  I think I was just so tired.  I thought poor Steve.  Caregivers have to be strong all the time.  Steve and I talked it out.  I prayed it out as well.  I can’t tell you how great Steve is and so supportive.

Well,  I have put away all those negative thoughts away.  I know it probably won’t be the only time it happens.  Ibrance sent me this package today and in it had a statistic shown in the picture.  You could look at the statistics either positively or negatively.  So instead of focusing on the negative, it is twice as long as if ibrance was not available.  Instead, I will focus on my faith, on the positive miracles and information.  Dr. Citrin has in his book metastatic breast cancer is not a death sentence.  He has a very different statistic as shown in the picture.  I know survivors who have lived many years with metastatic breast cancer.

So as I move on to another week,  I will concentrate on my relationship with God and let all this week go.  It is all about attitude and perspective.    You can choose to look at things positively or negatively.  I am determined to look at the positive.

James 1:6 But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind.

Making choices and taking risks

Life is all about making choices. Choices we make are sometimes good other times bad.  The last couple of posts were to bring you up to date as to how I got to where I am now.

For several years now, I’ve been dealing with lymphedema. I have researched and discussed options for lymphedema.  The video that I found by Dr. Liu pushed me to make the call to CTCA.

Video link

http://www.cancercenter.com/video/treatments-technology/surgical-treatment-options-for-lymphedema/

I finally called into the customer service line for CTCA. Their customer service agents are great and have a lot of information to provide. I gave him my information  and someone called me back. I discussed it over the phone for a while. That night Steve and I talked about it. It wouldn’t hurt anything for me to at least try to see if I was a candidate for the surgery. I called back the next day and was told that they would get my medical records and review  and call me back after they discussed it with Dr. Liu.   It was about a week later and I got a phone call that they considered me to be a good candidate and would bring me up to Zion for additional screening. I was so excited. Steve was going to be training that week so I asked Delia to come with me.

In November, we made the trip to Illinois.  For the evaluation,  CTCA will pay for the patient and an additional caregiver flight and hotel.  CTCA will also do all the tests and evaluations needed. We  met with several doctors and staff during our visit. On the Monday when we were supposed to be going back home, we met with Dr. Liu. Dr. Liu discussed the options available for surgery for lymphedema. We discussed the options and he approved me for surgery. We were going to do the lymph node transfer and also do another breast reconstruction. He was going to perform the tram procedure where he would take the fat for my abdomen and remove the implant. That is what I wanted to do originally.  I was so excited.  Delia and I went and had lunch before we left for the airport.   I got a phone call at lunch from the nurse asking why I had cancelled my oncologist appointment. The doctor and I decided since I had already been to my oncologist at home that there’s no need to follow up here.  The nurse said that my blood tumor markers in my blood test were higher than normal.  My oncologist at home had never checked that.  The nurse  asked if I could stay an extra day for a pet scan.  Talking about high and low points in one day!!!

So the next morning, I had my first PET scan. Well being the researcher I am, I had already looked at my test results online before going to see the oncologist later that day.  I already  knew before I went to oncologist, that the cancer was back. The doctor told me that the cancer spread to the lymph nodes in my chest and lower back.  Dr. Citrin told me the treatment plan and then talked to another doctor and it was decided to wait three months and get a follow up PET scan.  He said I was well balanced and felt I could handle the wait.  Come to  find out later,  I had a pulmonary effusion and that the doctor wanted to see if that would resolve on its own.

I believe that God led me to CTCA not for the lymph node transfer but for reasons I did not know at the time.  God works in mysterious ways.  My oncologist  at home never ran any tests not even blood tests.  If I had not come to CTCA,  we would not have caught the cancer in time for treatment.  I am so grateful to God and the staff of CTCA.  If you know of anyone that has cancer and wants a second opinion,  I highly recommend CTCA.  The staff will not hesitate to run the tests needed.

In my instance making a choice to come to CTCA, was a choice and risk well worth it.  I can’t be more positive with this team on my side. God is always in control!  Don’t be afraid to take risks!

James 4:14 Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.

 

 

 

2016 – The year of the unexpected

I call the year 2016 the year of the unexpected for so many reasons.  I am still dealing with the Neuropathy and Lymphedema .  My right arm would swell even though I wore my compression sleeve, did the manual lymphatic drainage,  wrapped my arm at night.  I went back to physical therapy and they were able to help me get it under control.  I think it is mainly the laser that they have to use.  Of course that laser is so expensive and the insurances will not cover it for individuals.

I also was having a lot of nerve pain in my right and left hands.  Of course I know that pain is caused by my  chemo treatments I had previously.  I went to see a neurologist .  She was great.  She tried every medicine and treatment that she could think of.  It was getting to the point when I worked that the pain in my hands were so bad that I would come home crying in pain.  It was still worth it to work to me.  I will address that in another blog later.

I went to a spine doctor and pain management doctor.  Went through, numerous MRI, CT scans and nerve blocks.  The nerve blocks were the worst.  Had a myleogram in August which showed spinal stenosis,  degenerative bone and possible compressed nerve.  A laminectomy was done in September.

The laminectomy was very painful.  I was on pain medicine for about  two weeks.  I never knew how much I used my neck muscles.  I learned to use my stomach muscles to help me sit up. The surgery did help with the shooting nerve pain in my arms.  However,  I still had the neuropathy in my fingers on both hands.  I decided to return to work part-time.

I had heard and read so many articles on lymph mode transfer surgery for the improvement of Lymphedema .  I listened to Dr. Liu from CTCA on tv and the internet.  I really  liked what hope this gave for Lymphedema  patients.  I called CTCA to talk with a representative about the procedure and what the next steps would be. I was setup with a series of appointments at CTCA.  I was excited to go to CTCA.  I will continue this in my next post!

It was a year filled with unexpected ups and downs.  We went to Las Vegas, Florida, Iceland  and the Galápagos Islands.  Each special and unique in their own ways. Got to go skydiving and ride in a hot air balloon off my bucket list.   My nephew had twin boys and is engaged to be married.  Had to learn a new system at work.  Steve and I brought a piece of land in Florida for our future retirement home.  My sister Donna had two surgeries and is doing a lot better.   My sister Delia and I went to Tenn/Kentucky for a short vacation.  We had a mini end of year vacation at Myrtle Beach with family.

I can’t tell you how much you need to get out and enjoy everything life has in store for each of us. Of course we all love material things,  but what I remember most is the memories made with my friends and loved ones.  Live each day as it is your last!

For more information about neuropathy

http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944

For more information about lymphedema

http://www.breastcancer.org/treatment/lymphedema

 

Matthew 6:34

“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”

The year of reconstruction

I consider the year 2015 as the year of the reconstruction.  Not only reconstruction of my breasts.  Reconstruction of my life to adjust to the changes and side effects of breast cancer. I had two breast reconstruction surgeries in 2015. The first in April and a second and August.  I  had expanders put in during my double mastectomy in August 2014.  Then, I had to have weekly fills until I was satisfied with the size of  new breasts. There many choices to be made to decide if you want implants, no reconstruction, DIEP flap, TRAM flap and many others.  The choice is personal and different for each person.   There is no right or wrong choice.

A good resource on the types available can be found at

http://www.breastcancer.org/treatment/surgery/reconstruction/types

I knew I wanted breasts just not as large as I had previously.  I had huge breasts before and wanted to go way smaller.  I researched the different methods and had actually wanted the TRAM flap.  The doctor told me that I did not have enough fat in my abdomen for that.  The one time I wish I was actually fatter.  People would tell me they would give me their fat.  Only if it was that simple.

After discussing with Steve and the doctor,  I decided to go with saline implants.  Well, I thought this is going to be easy and one of the hard last decisions to make regarding the reconstruction.  I had the surgery in April  2015 for breast reconstruction .  The surgery and drains were a lot easier than the double mastectomy.  I was pleased with the results.  The doctor had told me beforehand that my left side would always be tighter due to the radiation on that side.  I can live with that.  After about a month, I noticed that my right breast was drooping. At my next appointment,  I mentioned to the doctor and he said we cold do another surgery and put in a mesh to support the right one.  Then, he said he could eliminate the fat around the side during surgery.  After a month,  I was being told that I needed another surgery? Well I was going to go to someone else and get a second opinion first. I was quite upset.

So I set up a follow-up appointment with another plastic surgeon. This plastic surgeon recommended going with the gummy bear implant. I had researched  that previously but my previous doctor did not think it was a good idea.  Of course there were jokes when I said gummy bear implants which are actually called cohesive breast implants.  The main thing I liked about it was the doctor was not going to have to make another scar atop my breasts but would go in underneath my breasts.  No drains needed.

Website for additional information about cohesive implants

http://sientra.com/feelgood/gummy-bear-implants

I had the second reconstruction surgery in August 2015.  My recovery period was short and not as much pain.  I was and am very pleased with the results .  The extra skin was still under my arms near the breasts.  The doctor recommended coolsculpting to get rid of the extra fat under the skin.  I didn’t know much about coolsculpting. Researched it some and the doctor recommended to go ahead with it.  I will get into more detail on this in a later post.  Let me say coolsculpting is not all it was made out to be.  More pain for a week than I had ever had before.

At the same time all this was going on, I was trying to learn how to control my lymphdema  and neuropathy. So in general,  my mind, body and soul were all undergo reconstruction to adjust to the new normal .  Even through it all I knew my family, friends and God were there for me.  It was that I just wanted it to be done and over with quickly and that was not in God’s plan.

A good reminder of that can be found in

Isaiah 55:8-9New International Version (NIV)

8 “For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the Lord.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

So I will wait patiently and with the help of God to determine my next step in life.

First breast cancer diagnosis

To start this blog,  I will share with you my first breast cancer diagnosis!

I will never forget the first time I heard you have cancer. It was November 2013. I had found a lump in my armpit a couple of weeks earlier. I knew it wasn’t normal but wasn’t sure what it was. I went to a new doctor near my office . I went just for a yearly physical exam.  I had an annual physical exam last year.  My doctor actually found something they sent me for a mammogram and also had an ultrasound. The results from mammogram in 2012 came back as negative. In 2013, I wouldn’t be that lucky. At my 2013 physical exam, I told my doctor about the lump in my armpit.   The doctor said it was probably just part of my chest.   I knew that wasn’t true. The doctor sent me for a mammogram and ultrasound. Then the doctor did a biopsy on the lump on my arm pit and a couple of places the ultrasound found in my breast. About four days later, my doctor called and asked me to come to the office. He asked me to come that same day and afternoon.

I knew something wasn’t right! But part of me was still in denial. So since the doctor’s office was right next-door to where I worked I went right over.  That is one of the days I’ll never forget. The doctor confirmed that I had cancer and it was found on in my lymph nodes in my armpit  as being breast cancer. However the biopsies they took my breast came back negative.  I didn’t cry, didn’t get upset, I just listened.  The doctor asked if I wanted my husband to come in. I said no I’ll just tell him.  The doctor recommended that I call my husband and let him know and he would talk to me if you have any questions.

So, I called Steve and told him over the phone. Then,  the doctor talked to him.  From there the whirlwind of biopsies, doctors appointments , and tests started.

Over the courses of the next two months, I had some wonderful times and experiences and not some wonderful times experiences.  I had over 10 biopsies all different parts of my breast. The doctors and surgeons were never able to find the tumor in my breast.Went on wonderful vacations to Florida and South Africa.  I was not going to let the cancer interfere with my life or so I thought.

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