Learning to Live With the Fear of Cancer Recurrence

“Cancer may rob you of that blissful ignorance that once led you to believe that tomorrow stretched forever.  In exchange, you are granted the vision to see each day as precious, a gift to be used wisely and richly.  No one can take that away.”  Anonymous

The question I get asked the most from breast cancer patients going through cancer treatment is:  “Does the fear of recurrence ever get better?”

I have spent quite a lot of time pondering and praying about this question.  For me, the fear of recurrence has not gotten any better.  So how do I give advice to help?

First of all, why wouldn’t any of us that have been through cancer and survived not be afraid?  We have gone through hell and back.  We know what it is like.  It is not something you want to repeat.  So we have been told “you do not have any cancer any more.”  Great news, isn’t it?   But how do you deal with the uninvited guest called FEAR that has moved in with you?

It is like trying to teach that guest not to scream and shout, but to whisper.   You really cannot get them to leave entirely.  This relationship is permanent, so you have to come to some sort of agreement and living arrangement that you can tolerate.  It is your house, after all!   If you try to totally ignore them, they start yelling.  If you acknowledge they are present, they calm down a little.  And if you put your boundaries up and tell them you are in control, not them, the taming process begins.

My FEAR GUEST is always whispering.  During my entire day, I know that FEAR GUEST is around.  Whispering, I can tolerate.  But FEAR GUEST loves to start screaming and shouting the minute I feel a pain, a discomfort, a cough, a headache, or anything unusual in my body.   I don’t even have time to tell them “be quiet” when the incessant chatter begins.  “Nah, nah, nah, nah, nah the cancer is back – it is in your bones, your lungs, your liver, your brain – ha ha ha”.  That is what the chant sounds like.   You counter back with,”IT IS NOT!  I am just getting older and am having some aches and pains today.” ” That’s what you think,” the FEAR GUEST screams back.  And so the argument begins.

I am learning I must be the boss and be in control of this FEAR GUEST because if I give them any leeway at all, they take it.  But at the same time, this FEAR GUEST can be a positive force in my life I have recently discovered.

If I am doing the things I need to do to from my end to keep the cancer at bay – proper rest, good nutrition, exercise, and take my medicine, like a good post-cancer patient, the FEAR GUEST tames down.  When I start doing things that are not good for me, the nagging voices begin. “Oh good, you are lazy and eating that sugar!” the FEAR GUEST taunts.

This also applies to relationships as well.  If I surround myself with the people who showed their love and support to me during cancer treatment and gave me the gift of true friendship, the pesky little voice is more subdued.  But if I start making excuses for people who totally abandoned me and think, “Oh, it’s okay to let them back into my life, they didn’t mean to abandon me” the FEAR GUEST starts yelling at me and taunting me.

Sometimes you find yourself telling random people about your FEAR GUEST.  If they have never had to live with a FEAR GUEST they might say things you don’t want to hear.  Words like,”oh put that out of your head” “don’t even think that way”.   Unfortunately, although they mean well, that advice just gives fodder to the FEAR GUEST.  So I am selective talking about FEAR GUEST.

I am learning to pay attention when FEAR GUEST screams the loudest and use it to my advantage.  This is still new to me.  I will keep you updated with my tricks to quiet FEAR GUEST!!  If you have managed to shut up  your FEAR GUEST, please let me know how!

Arimidex, Aromasin, Femara Drugs after Breast Cancer

Recently, I started on the prescription drug Arimidex or Anastrozole.   I will receive this drug for 5 years or if the ongoing clinical trials show additional benefit, perhaps more according to my Oncologist.  Arimidex is from a family of drugs called Aromatase Inhibitors as are the drugs Aromasin and Femara.  These drugs are given only to post-menopausal women.  Pre-menopausal women and some post-menopausal women are given Tamoxifen.

Wikipedia describes it like this:  Aromatase is the enzyme which synthesizes estrogen.  As breast cancers require estrogen to grow, Aromatase Inhibitors  are taken to either block the production of estrogen or block the action of estrogen on receptors.

So this drug is to help stop new tumors.  Certainly, reason enough to take it.

Since I was on the edge of menopause when I was diagnosed with Breast Cancer, my medical oncologist did a series of blood tests to make sure that Chemotherapy finished off the job.  The blood tests showed that I was indeed in menopause.  Apparently, determining if a woman is in menopause is a challenge.  But  I was able to receive Arimidex.  However,  I have to have an Estrodiol blood test every two weeks for an indefinite time period to make sure I remain menopausal.

Arimidex has a list of possible side effects a mile long.   One major side effect can be bone loss.I had a baseline DEXA scan to determine my bone density and make sure I do not have Osteoporosis or Osteopenia.  The DEXA scan was the easiest medical test I have ever had.  All women over age 60 should have one or younger if your doctor recommends.   You lie on a table, an arm goes over you, and the technician takes pictures of your bones.  My test took less than 5 minutes!  I was shocked.  Normally, I get into those other scans and they last for an hour or more.   I could not contain my joy!  My technician had mercy on me.  She said I had been through enough medical tests during the past year, and she didn’t want to make me wait for results.  She said my bones were very dense, and better than most women my age.   This was great news because Chemotherapy can cause bone loss.  And having strong bones can help prevent cancer metastases to my bones.

One other common side effect that I am trying to ignore is bone and joint pain.  I still had a lot of residual bone and joint pain left from Chemotherapy.  I feel 90 years old when I stand up and have difficulty walking for awhile.  But I am learning if I act like my cat, stretch before I walk, it is less painful.  It does get better with movement.    It is just one more thing I have to learn to deal with, so I will.

Arimidex  and other Armatase Inhibitor drugs are more fully explained here:

http://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors/

Tamoxifen is more fully explained here:

http://www.breastcancer.org/treatment/druglist/tamoxifen

I will write more about Tamoxifen on another post.

Caregivers of Breast Cancer Patients

I have gotten so many emails from caregivers of breast cancer patients – from daughters, spouses, partners, and friends.  It is such a difficult and challenging job.  If you are a caregiver, I deep compassion for you because you feel so helpless and don’t know how to make your loved one feel better.  And the ages of their patients have ranged from in their 30s to in their 80s which obviously makes a huge difference.

I’m single and my mom was my caregiver.  I don’t know what I would have done without her.   She cooked me pancakes, made me banana cake, and mashed potatoes made with cottage cheese.  Not the best diet, but it was all I could eat and craved during A/C Chemo!    It was good just knowing she was there if I needed anything.  That was the greatest gift she gave me – her presence.  So often there was really nothing she could do for me.  And because of steroids, I probably got a little testy with her to say the least.

That is the greatest gift you can give to any cancer patient.  Just being there for them.  It sounds so simple, but so much of the process just has to be endured by the patient.  It is tempting to try and push them to do more than they are capable of doing because you so desperately want to see them well.   They will get there.  It just takes so much time.

My best advice would be this:

1)  Don’t try to make them eat things they don’t want to eat.  Do attempt to add protein in creative ways to things they might want.  Example – the cottage cheese blended into pancakes or potatoes or noodle dishes, peanut butter into anything, and whatever other ideas you can create!  I could not tolerate any meat, but your patient may be different.

2)  The steroids change their moods dramatically.  For me, it was like I was living in someone else’s body and emotions.  Try to be as understanding as possible which is tough.  And realize that the mood swings are the drugs talking.

3)  If they are in the middle of A/C Chemo, don’t let them go to the grocery store alone.  It is so hard to go to the grocery store.  They may feel up to going, but once they get in there, it might be overwhelming because of the smells and the stamina it takes to do so.  One lady wrote and said her mom felt like going but passed out in the checkout line because her blood sugar dropped.   Once they switch to Taxol or another chemo drug, they will be able to go alone.

4)  Make sure they are getting enough fluids, especially the day before Chemo, the day of Chemo, and the day after Chemo.  Drink, drink, drink that water.  It helps the way you feel.

5)  If you accompany them to Chemo, try to let go of the patient.  During Chemo, the nurses are in control and will usually take care of the patient’s every need.  This would be a great time for you to get a little break and go to the cafeteria, leave and go get a cup of coffee, or do something for you, the Caregiver, while they are being taken care of by Chemo Nurses.  If you feel comfortable enough, leave and go shopping.  I really enjoyed being alone during infusion time as it gave me a chance to talk with other patients, the nurses, and the staff.

6)  A few tips no one may have told you about A/C Chemo –

a)  Patient may have minor but frequent nose bleeds – get them any kind of saline nose spray.  It really helps!

b)  Patient may have rectal bleeding from hemorrhoids – rectal wipes and cream really help.

c)  Make sure they take the anti-nausea meds at the FIRST sign of even a tiny bit of nausea.  You don’t want to wait until it is full-blown nausea.

d)  Let them call the shots about what they can and cannot do.  I had to get out of the house on my good days, but didn’t want to get germs because it was cold and flu season.  So I would just get in the car and drive to get out of the house.  It really helped to make my isolation  more tolerable.

And give yourself some much-needed breaks.  If you are afraid to leave, arrange to have someone come in and stay with them (especially if the patient is elderly).  It is a really challenging and difficult job to be around a chemo patient all the time.  You need a break!  Take it!

Pinktober, Pink Ribbons, and other Pink Topics regarding Breast Cancer

My new hobby during the month of October is turning over every pink package to see what it says, to see where contributions are being given, if any, and studying displays of pink on sale everywhere.

I asked Dr. Daniel Hayes, my Oncologist at the University of Michigan Breast Cancer Center, where he recommends donations be given.   His answers:

1)  Breast Cancer Research Foundation   http://www.bcrfcure.org/

2)  Susan G. Komen    http://ww5.komen.org/

He then told me that University of Michigan has received over $10 million dollars for breast cancer research money from these two organizations in the past 2 years.  Dr. Hayes was a scientific advisor to Komen and has been on the Board at Breast Cancer Research Foundation and is an advisor.  Not only do I trust him with my life, I trust his advice about donations.

Also, I have been a recipient of a gas card from the American Cancer Society to go back and forth to treatment!  This was a total surprise.  Also, I have participated in the Look Good, Feel Better program sponsored by ACS, and particated in their Making Strides Against Breast Cancer events.   http://makingstrides.acsevents.org/site/PageServer?pagename=MSABC_FY11_reus_learnmore

I am not so offended by Pinktober as some Breast Cancer survivors seem to be.  For one thing, I was diagnosed in October.  And all of the breast cancer medical places I had to frequent said October is their busiest month.  So I do believe pink heightens awareness.

What I am offended by are companies that jump on the pink bandwagon and give nothing to research.  They just appear like they do.  I hate seeing people be taken advantage of by pink propaganda.  PLEASE BE SURE to see where dollars are going before you buy any pink stuff.  So many companies are truly giving to good charities, but others, give absolutely nothing.

I walked in the Komen Race for the Cure with my family.  My dear Aunt Marian sponsored us and got us all together and bought us Team Denise shirts.   We had a wonderful day.  It was very emotional for me for all the support I received.  And it was moving and touching to see all the 17,000 people present at my local event.  The March of Survivors brought tears to me as I walked with other women who had been down the breast cancer road and survived.  Even 10 years ago, so many of us would not have survived.  I sprayed my chemo-cut hair pink and joined in on the fun along with the seriousness of the day. Komen is doing great work.

I know some people get angry at Komen for a variety of reasons, many accusations which have never been proven true, but I truly believe their intentions are good.  The proof is in the amount of dollars that are disbursed locally.  And if Dr. Hayes says they are a great organization, that is proof enough to me!

Cancerversary, God and Breast Cancer…

I am experiencing my Cancerversary.  As I write this, it is one year ago my family doctor called me and told me I had advanced breast cancer spread to the lymph nodes.  What do you do on a Cancerversary?  I’m not sure.  I thought it is time to share a God experience that happened to me one-year ago.

This experience  kept me going in the darkest of times, when I felt like dying, when I thought I was dying, and in my loneliest moments.  I said it many times when I felt like God had abandoned me.  This experience is  also what motivated me to write my Blog:

It was the afternoon of October 10, 2011.  In the midst of my shock and disbelief from the words my family doctor had spoken to me earlier in the day, I picked up my Bible and placed it on my lap.   I cried out to God and asked Him to give me hope as I had none.  Randomly, I opened my Bible.  My eyes landed on this verse:

Psalm 118:17:   “I shall not die, but live, and declare the works of the Lord.”

I couldn’t believe it.  Was God really speaking to me?  Would I live?  I didn’t know, but this verse brought me great comfort and the glimmer of hope that I needed.  And not to take any more chances, I closed the Bible!

That same night, I was feeling inconsolable again.  I couldn’t stop crying as terror gripped my heart, and I asked God for strength because I had no idea how I would make it through the unknowns that were ahead of me.

My thought was, “I need a positive preacher.”   Televangelist Joel Osteen popped into my head.  I watched Joel Osteen on television periodically. He is known for his positive spirit.   Sometimes I disagreed with Joel, but  I knew I needed his gift of being positive.

I went to Youtube.com on my laptop and searched “Joel Osteen” and over 20,000 results popped up!  Randomly, I chose a sermon.  “One out of 20,000 results, what are the chances this will help me?”  I thought.   I began to listen and was a little discouraged, because nothing seemed to be speaking to me.  Joel began talking about claiming scriptures, then suddenly this got my full attention:

 Joel Osteen speaking…In 1981, my mother was diagnosed with terminal cancer. Every voice said,  “It’s over. She’ll never make it. Start planning her funeral. ” But my family and I found another voice, a promise from God’s Word in Psalm 118:17. It says,  “I will live and not die and declare the works of the Lord. ”  We had to decide,  “Are we going to believe what God says about her and let His promise give us direction and hope and faith? Or are we going to go in the direction that we feel? ” Discouraged, depressed, and despaired? My mother had been in the hospital for 21 days, and the doctors finally released her because there was nothing else they could do. We gathered early that next morning in the den as a family. We made a decision that we were going to stand on God’s promises knowing that He is our helper, and He will never fail us or let us down. Day after day, we just kept moving in that direction, acting like God told us the truth.

In the natural, it didn’t look like it was working. The first several months, my mother never got any better. There were times we thought that if healing was going to happen, it would have already happened by now.  But we had to ignore those voices and keep pressing forward. God is faithful. One day, we began to see the shore come into sight. Though she didn’t get well overnight, little by little, month after month, she got better and better; and that was 29 years ago. Today, she’s perfectly healthy and strong as can be.  (At this point Joel has his beautiful mom stand up in the congregation now in her 70s and looking years younger!)

I felt overwhelmed that the very scripture I had read earlier that day was contained in this randomly- chosen sermon while Joel explained his mother’s cancer diagnosis and miraculous recovery.  At that moment, I did know I was being spoken to by God.

I knew I had a responsibility as there were two parts to  Psalm 118:17:   1) Living not dying  and  2) Declaring the works of the Lord.   I made the decision that night that I would do everything I could to help others who were diagnosed with breast cancer.    The only way I knew how to declare the works of the Lord was by writing to others.  The Blog idea came to mind and that is how this all began.

I must have repeated Psalm 118:17 hundreds and hundreds of times this past year.  Often times it was the only prayer I could pray.  I said it when I didn’t feel it, I prayed it when I didn’t want to pray it, and I spoke it out loud when I didn’t believe it.   I prayed it before going into surgery for the Mastectomy, over and over during Chemotherapy, under the Radiation machine, and before,during and after most doctor appointments.   I wrote it on a piece of paper that has sat on my fireplace mantle for one year.

I guess this is the best way  I could possibly celebrate my Cancerversary!   Being alive and cancer free, and writing my Blog while declaring the works of the Lord!   Thanks be to God!!

Everything you wanted to know about Chemo Ports

I had a chemo port placement and chemo port removal for chemotherapy in 2012 and in August, 2015, I accompanied my sister for a chemo port placement.

A port differs from a PICC line as a port is surgically implanted into your body and has a tube or catheter that is connected to an artery or major vein.  It can stay in for several years if need be.  A port saves your veins and becomes your good friend during Chemotherapy and with the countless blood tests that go with it!  You may wonder if it is worth everything you have to go through to have a port.  My answer would be, yes, as it does save your veins!

Port Placement

The port is surgically implanted – can be right or left side of chest depending upon if you had a Mastectomy or not or what your Oncologist orders.  It looks like this:

When I had my port put in, I didn’t realize it was such a big deal.  It is an outpatient surgical procedure with a pre-op room, operating room, surgery, and recovery room.  I don’t know what I was expecting, but not that much fanfare!  The actual procedure took about an hour.  The surgical team gives you twilight sleep, but it didn’t do anything for me.  I was wide awake and remembered the entire procedure.  They asked if I wanted more so I would fall asleep.  I did not.  I hate that drugged up feeling, but everyone is different!  My sister said she did fall asleep during some of the procedure.

The surgeon numbs the area with  Lanacane, a novocaine-type drug, makes an incision, the tube is connected to the artery or vein, and then the port itself is sutured into your body.  Then the area is stitched closed, and they take you to recovery.  I was not able to drive home and was warned ahead of time to bring a driver.  I also had to take it easy for 3 days with no lifting, stooping, or using my upper body.   I felt quite fine after port placement, but my sister had a different experience.  She was very light-headed and weak from the twilight sleep meds.  And her blood pressure plummeted.  It is really the best idea if you have a wheelchair to leave the post-op area.  My sister would have collapsed had she not been in the wheelchair.  But as soon as I got some food into her (salty soup) and got more fluids into her, she started feeling better immediately.

Before you have your port placed, it is a great idea to ask the surgeon where it is going to be placed.  If they can avoid your bra straps, this will help enormously in the future as many women complain greatly about this.

My surgical area hurt like crazy for 2 weeks.  Many people have no pain at all.   My theory that mine hurt so much was because I had a heavy breast on that side and wasn’t able to wear a tighter bra because I had a Mastectomy just 3 weeks before the port placement.  So my breast pulled on the incision.   I took Motrin, but it really didn’t cut the pain that much.  The majority of people do not have the kind of pain that I did.

The other thing I wasn’t prepared for is how the port disrupts your sleep.  I was not able to sleep on the side with the port for over 6 months!  Since I had a mastectomy on the other side, it was sleeping on my back or nothing!   Then one day, all of a sudden, all discomfort left, and I was able to sleep on that side.

During Chemo, my port worked most of the time.   On 4 occasions, the port got clogged up.  So the Chemo Nurses would have me do all kinds of acrobatics to get it to unclog.  They were always successful with almost standing on your head (wig fell off once!), lying back in a chair, or putting your hands over your head and coughing!  It always worked.  They do have drugs they can insert into the port to unclog if necessary.  Thankfully, I did not need that done.

Your Oncologist will let you know when the port can be removed.  In the interim, if it is not being tapped for chemo or blood tests, you must have a port flush at least once per month at your local blood draw lab or Oncologist’s office.

I have gotten letters from people who have had their ports in for as long as 10 years!  They were afraid to take them out or afraid of recurrence.  Those are legitimate fears, but trust me, taking it out as quickly as your Oncologist recommends is the best advice I can give.

Port Removal

Port removal is not as traumatic as port insertion.  For one thing, you are so happy to have it out!  First, blood tests are done to check your platelets and clotting factor.  Mine were normal, so they were able to proceed.  They have to make sure your blood will clot and that you don’t keep bleeding out of the artery.  Good idea, huh?

At my medical facility,  the removal was done in a surgical room, but not a full-blown operating room.  Two assistants prepped me and my chest area.  They did not offer me any drugs or twilight sleep.   My surgeon told me that everyone gets really tough during Chemotherapy, so drugs usually aren’t necessary.  He was serious and spoke truth!

The surgeon numbed the area with Lanacane.  First he made an incision then surgically removed the catheter from the artery.  He had to put pressure on that area for about 5 to 7 minutes to make sure the bleeding stopped.  Then he removed the port by cutting the sutures that held it in place.  Again, he put pressure on the area for several minutes.  Once the port was out, he made an inside row of dissolving stitches and an outside row of dissolving stitches.

The procedure itself took about 30 minutes.   I was given instructions to take it easy for 3 days, again not stooping, lifting, or exerting my upper body.  The Lanacane is wearing off as I write this, and it is starting to hurt a little.  This pain will be fine with Motrin!  I can tell that already!

There you have it.  Everything you wanted to know about your Chemo Port!  I hope the information is helpful!

If you need chemo hats – either for men or women, I began my store – http://www.hellocourage – because my medical bills were outrageous!    Check them out!CollageSpring2015