Numbers

Numbers play an important role in everyone’s life.  A lot of times without even noticing, everyone is concerned about some type of number.  Sometimes numbers can be good or bad.  I know that numbers have always played a role in my life.  Whether it be birthdays gone by, number of days to vacations, performance goals, countdown starts on Monday for the weekend and the list goes on and on. Numbers play an importantly  role in cancer treatment too.  Sometimes, it easy to get caught up in the numbers instead of living life.

There are so many important numbers to look at when going through cancer treatment.  Will my blood work numbers be good enough for me to continue treatment?  What cycle of treatment are you on?  Will my white blood count be low so I have to be concerned about infection? Taking your temperature twice a day and praying the numbers don’t indicate an infection.  Will the platelet count be low to be concerned about bleeding and bruising?  Will the red blood count be low and cause anemic symptoms?   How many more days do you need to take this medicine?  How many more pills can I actually be expected to take on a daily basis?  How many more days/months until the next scan to see if the cancer has progressed or stable?  How much was that bill for?  Getting caught up in the cancer statistic numbers is so easy.   I know more about blood work numbers now than I ever wanted to know.  Some of the numbers patients do need to monitor.  You must not let these numbers dictate how you live your life.

I still find myself looking at the numbers and comparing to previous months.  Do these numbers play as important role as they did in the beginning?  I will still enjoy any good news in the numbers, yes  but I do not let the numbers allow me to get me upset.  I do not have control over these numbers.  I do not let the numbers determine how I am going to live my life.  Is God looking at these numbers to determine my life?  As long as I can,  I will live my life to the fullest and enjoy every moment I have.

Joshua 1:9 – ‘Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.’IMG_0918

 

 

Cancer is personal

IMG_0865A very close friend of mine, sister died a couple weeks ago from brain cancer.  She sent me an email yesterday. From the email I could tell that she was not having a very good day, so I called her today and she asked me why her sister didn’t fight more. I thought what could I say that would make her feel better.    It may not seem like she didn’t fight anymore. Chemo is tough on anyone. Especially when your body is weak and the cancer is aggressive.   Her sister had fought as much as she could and then left the fight in God’s hands.    Each person’s journey is totally individual.  Don’t compare them. Even though two people may have cancer, their types, treatment and circumstances are totally individual.

After the first time I had breast cancer I said afterwards , I would never have chemo again here I am getting chemo again.  Time and circumstances make you forget the bad side of cancer.  I have a friend that died from lung cancer last year and had decided that he didn’t want any treatments.  I totally understood but some questioned his decision.  Chemo is tough not only on the patient but on family and friends.  Everyone fights in their own way. Sometimes it may seem like giving up would be easier.

I was talking to my primary care doctor today.  She asked how I always stayed positive and smiled.  I wouldn’t know how to do it any other way.  I have my faith, a great family, great friends and a positive attitude.  That’s half the battle.  The side effects and treatment are the hard part.    I share my experiences just to show what I am going through.  I have my tough days too. A couple of weeks ago ,  I had a terrible day.  I had a migraine headache and it just seemed that everything hurt.  I stayed in bed the whole day which is something I rarely do.  Steve came home and I was just laying in bed wide awake.  I knew it was hard for him to see me like that.  So I mustered up what energy  I had, got up and went for a short walk with him.  I knew it would make him feel better and it made me  feel a little better too.

I told my oncologist yesterday about my back hurting more now.  He asked me if I took the pain pills he had prescribed and if needed anything stronger.  Well, I of course told him that I took them if I was I terrible pain.  He again counseled me that the pain pills are there for any type of pain and there is no shame in having to take them.  I just don’t like taking pain pills.  No real justification, just I really don’t like how they make me feel afterwards.

No one is guaranteed tomorrow.  Make the most of the life you have now.  Enjoy all the time you have.  Enjoy life’s victories!

Life truly is short. We often don’t like to think about it, but this really could be our last day to live. But that shouldn’t frighten us as Christians, because Jesus has promised that He will give eternal life to all those who put their faith in Him (John 10:28).

Wind River Cancer Wellness Retreats & Outreach Program

Let’s help Wind River Cancer wellness retreats by donating so that they can keep the retreats free to survivors. Click on the link below to donate. Any amount is appreciated! Please feel free to share this post.
https://www.grouprev.com/2017WindRiverWalk-debra-burgess
My experience at Wind River Cancer Wellness retreat
It has been a week since I went to the Wind River Cancer Wellness retreat . I
returned home with a new special spot in my heart for Wind River and the new friends I made. The retreat was awesome and the views spectacular. The retreat has helped me learn to listen, share my feelings, and communicate with others and meet new friends. I do not have words to describe how awesome my experience was there with you all. Wind River provided so many opportunities and I now feel rejuvenated and reconnected, exactly what I needed at this point in my cancer journey. My heart felt gratitude for your hospitality, your kindness and caring, your sharing of so many helpful techniques and ideas to incorporate into my everyday life. There were so many special moments to look back on. We did everything from painting, yoga, nutrition, tai chi, and many others.
Thank you to Dave Pschirer and Shannon Carney for offering this wonderful opportunity!
The experience is beyond words. If you know of a cancer survivor that would like to go to the retreat, please let me know.

Coolsculpting

I thought I would share my experience with you all. If it saves , anyone from what I went through that would be great!

The plastic surgeon did a great job with my reconstruction. For that I am thankful! After that, it was really obvious that he made recommendations that would make him the most money!

Considering cool sculpting, let me just say don’t do it. It is super expensive. In my case, it cost 2000.00 . Cool sculpting is not covered by insurance. My plastic surgeon recommended to me after my reconstruction surgery to remove the excess skin. (I didn’t know it wasn’t approved by the FDA for that area until afterwards.)Well that didn’t work. It was painful. I was told there would not be painful and I wouldn’t feel it. Wrong, I was in worst pain I have had. Even worse than any of my surgeries. I actually had to take pain pills for days afterwards. It left hard scar tissue. Of course the doctor said, it wasn’t from cool sculpting. I didn’t have it before that. I had to get weeks of physical therapy to break up the scar tissue and get my range of motion back in that area.

When I went back for a follow-up appointment with the Doctor, he said I should get cool sculpting for the excess skin. What I already had it, well maybe you should get it again. Uh, no I don’t think so!!! Needless to say I won’t be going back to him.

If you are considering cool sculpting and want to talk about it with me just let me know. This is just my experience and opinions. Others have obviously had a better experience.

PET scan

There are differing opinions about breast cancer survivors getting a PET scan.  Even when I was first diagnosed with breast cancer,  I did not get a PET scan. I had a CT scan.  My oncologists always told me that PET scans were not done as follow-ups because of lack of evidence that PET scans revealed recurrence or metastasis, too much radiation, cost, and anxiety.  I always thought these were bizarre reasons for not following up for recurrence of breast cancer.  I had already had 26 weeks of radiation.  How much more could one test do?  Doctors told me that the patient knew better than anyone if there was something unusual going on in their body.  My follow-up exams consisted of breast self exams by the doctor and asking  how I felt.  There were no blood tests done.  Not even,  the simple blood tumor marking blood test. Some doctors do scans and blood tests as a regular  follow-up. If in doubt,  seek a second opinion.

I believe the real reason lies in the cost to perform a PET scan and getting the insurance to cover it.  The blood test for tumor markers is not very expensive so I never understood why a doctor would not perform that just as a precaution.

A PET scan is Positron Emission Tomography.  It is a nuclear test.  I didn’t really know what to expect when I had my first PET scan.  It was early in the morning and could not have anything to eat six hours before.  No exercise 24 hours before the test.  Could drink water.  First,  I went into a separate office.  The nurse then asked a series of questions.  The nurse will go to another room and get the radioactive sugar injection.  The hardest part for me is the needle and finding a vein. After the injection is given ,  I went to a separate room with nothing in it but a recliner, warm blankets, bottle of water and a camera.  I was told not to move not even read a book or watch tv.  I had to sit there still for 45 minutes before the PET scan began. The nurses watch you from a viewing room. Went to another room and the scan began .  Thank goodness I am not claustrophobic.  The test lasted 30 minutes.  Time can vary depending on what areas are being scanned. At CTCA,  the oncologist gets the results within a few hours.  Sometimes you would wait a couple of days for the result.  The waiting for the results begins.  Try to occupy your time with something distracting.  For me, praying works!

You will meet the doctor and review the PET scan results.  An example of my result

MUSCULOSKELETAL: The osseous metastases have progressed. Although there is now alarge sclerotic metastasis visualized in the left aspect of the L3 vertebral body, the activity has slightly decreased, with maximum SUV of 10.2 (previously 10.8). However, the extent of the active lesion has increased. There is new activity in the right acetabulum on image 220, with maximum SUV of 12.1, compatible with metastasis. No definite CT correlate is visualized. A new sclerotic lesion is visualized in the right femoral head measuring 1.0 cm which is hyper-metabolic, with maximum SUV of 6.7. A new sclerotic metastasis is also noted in the left femoral head, with maximum SUV of 5.7. The metastasis in the left anterior acetabulum has increased in extent and activity, demonstrating a maximum SUV of 10.5 (previously 8.2).

To me reading this the only thing that stood out to me was metastasis.  I knew that meant the cancer had spread.  The other parts were confusing.  My doctor,explained it all to me and what the next course of action would be.

A PET scan does not need to be a cause of worry.  It should be a regular test to monitor a patient’s chance of recurrence.

For more information about PET scans and how they work

http://www.cancercenter.com/treatments/pet-scan/

http://www.cancerfightersthrive.com/we-have-your-scans/

https://www.radiologyinfo.org/en/info.cfm?pg=pet

Lean on your faith and God during these times.

“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.” Isaiah 41:10

When I was waiting in the room for the PET scan,  that left lots of time for praying!

“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

I will get my follow-up PET scan in 3 to 6 months.  I am praying for no progression and decreasing sized lesions.

I believe more studies should be done on breast cancer survivors need for PET scans. IMG_0617

 

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.