The Fear of Cancer Recurrence

Cancer recurrence is never far from your mind once you have become a Cancer Survivor.  Some survivors say it gets better with time.  Other survivors say, it gets more pronounced.  But it is necessary to talk about so both Cancer Survivors and friends and family know how to deal with it.

Recently, I found 2 lumps in my Mastectomy breast.  The whole scenario goes on in your head – oh, it must be cancer, no it can’t be cancer and the arguments begin.  Today I had my first appointment with my Medical Oncologist since completing Radiation.  Of course, I had to fess up about the lumps even though they examine you thoroughly.  Both my Oncologist and Nurse Practitioner thought they were scar tissue.  I thought they were as well – just a gut feeling.  Relief sets in once again.

Sometimes people will say, “Oh any day we could have a heart attack and die.”  That is very true.    That’s a nice generic statement for those who have not stared death in the face, and those statements usually come from someone who has always been healthy.   It is a statement that is not part of their reality at this point in their life.

Being a Cancer Survivor feels like you have been hit by a train you did not see coming.  Your body and your life are torn to shreds by this train.  Gradually, piece by piece your body and your life are put back together again.  Your life is not what it was before, but it has great possibilities nonetheless.  The terror comes because you fear that train will come back and mow you down again.  Especially because you are always being given statistical information on how likely it will happen by medical professionals that you trust.  You are definitely not sure you have the strength to live through it again, as you barely made it the first time.  You already know and have experienced what being hit by that train feels like.

If you are a friend or family member of a Cancer Survivor, don’t try to make light of their fears.  They are real.  Simply say statements like “It must be challenging to live with those fears”   “That has to be a source of much pain for you”  or “I cannot imagine being in that situation”.

As a Cancer Survivor, I cannot suppress the reality  of my situation.  It means learning to live in this moment, cancer free, and not worry about tomorrow.  I am trying to learn that new reality.

Cleaning your Closets after Cancer Treatment ends

When I was first diagnosed and very uncertain about my prognosis, I looked at my cluttered and spilling over closet and thought, “Wow, someone is going to have to clean out this closet when I die.  I feel sorry for them!”

Yesterday was my 33rd and final Radiation Treatment after being diagnosed with Breast Cancer almost 10 months ago.   Since that time it has been surgery, recovery, Chemo, and Radiation with very little down time.  Guess what, I am alive!  That is cause for celebration!  But the bad news is, I have to clean my own closet!  So I decided to tackle it immediately!

The first things to go are things I can no longer wear because of the Mastectomy.  Even when I have reconstructive surgery, some things just won’t work.   Next comes the bras and lingerie that I no longer can wear mostly because of underwires or they just can’t accommodate the prosthesis.  Then it is time to sort through the swim suits.  I hoard swim suits because they always look good and seem to keep their shape.   Now I can only wear 2 of them – one mastectomy suit and an older suit that I was able to modify.   Time for the rest to go.  That hurt a little, but  my new motto is, “Doing (whatever) is easier than Chemo” so in the pile they go.

Then there are the formal dresses I’ve kept from 1982 thinking they will come back in style, and I will have occasion to wear them.  They won’t, and I won’t.

Now shoes and purses are another story.  This becomes more challenging.  No, I cannot give away that knockoff Coach purse, can I?  It looks so real and what if I get arrested for giving it to the Goodwill?    Oh, remember those darling sandals that never did fit, but they are so cute!  And the dialogue goes on in my head!

And so the transition begins.  Out with the old, in with the new.

The Many Different Kinds and Stages of Breast Cancer

Before I became a Breast Cancer patient and now survivor, I thought there was one kind of breast cancer–a one size fits all approach.  Well, I did know that some people had mastectomies and others had lumpectomies.  Also, I knew that some had chemo and radiation and others did not.  So was I shocked to find out all the differences of Breast Cancer.

My objective here is to just give an overview.  If you are a breast cancer patient or survivor, these terms are familiar to you.  If you are not, perhaps the information will help you understand the different kinds and stages of breast cancer..

Types of Breast Cancer.  For more info go to http://www.breastcancer.org/symptoms/types/

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Stages of Breast Cancer  for more information go to:

http://www.breastcancer.org/symptoms/diagnosis/staging.jsp

Stage 0

Stage 1a and 1b

Stage 2a and 2b

Stage 3a, 3b, and 3c

Stage 4

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Lymph Node Involvement                 http://www.breastcancer.org/symptoms/diagnosis/lymph_nodes.jsp

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Cell Grades of Breast Cancer  for more information go to:  http://www.breastcancer.org/symptoms/diagnosis/cell_grade.jsp

Grades 1, 2 or 3

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Estrogen Positive or Negative and Progesterone Positive or Negative  http://www.breastcancer.org/symptoms/diagnosis/hormone_status/

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Her2Neu Positive or Negative          http://www.breastcancer.org/symptoms/diagnosis/her2.jsp

Determines if you need the drug Herceptin for one year

I hope this gives a brief synopsis of the many intricacies of Breast Cancer.

Allergies and Allergic Reaction Before, During and After Chemotherapy

UPDATE – since writing this post I have heard from so many people who have developed severe allergies 2 to 3 years out from chemo.  Apparently it is not uncommon just from the letters I have received.

It’s been rather a lonely ride as to one aspect of the many side effects and residual effects of Chemotherapy.  I developed severe food allergies and other allergies during and after Chemotherapy.  Previous to Chemo, I had none of these.

After Infusion #2 of my first Chemo drug, Adriamycin and Cytoxan, I developed a mucus cough.  At first I thought I had a cold.  Then I thought it was a sinus infection.  My Medical Oncologist and his staff thought it was mucousitis because of irritation to my sinuses and esophagus.  It continued and then started getting worse.  I had been tested for lung mestastes and other lung issues.  I had none.

After 9 weeks of Adriamycin and Cytoxan Chemo, I began Taxol.  While receiving the Taxol infusion, the cough would be worse. But I was not having enough of an allergic reaction for the Chemo Nurses to stop the infusion.   I put 3 Hall’s cough drops in my mouth so I wouldn’t drive everyone nuts from my chronic and loud coughing in the Infusion Center.  Usually, when I got home from receiving Taxol, the mucus would increase dramatically to the point I would sometimes throw up.  Then I would notice that the next few days I would be better probably because of the steroids I had received.

One night on a no nausea Chemo day, I ate pizza with thick crust.  Before I got home from the restaurant, I was coughing so hard nothing would control it.  By the time I got home, I was throwing up and felt like I needed to call 911.   It finally dawned on me that I was suffering from food allergies to probably wheat.

To make a long story short, by trial and elimination, I discovered I had developed allergies to wheat and dairy products, along with many outdoor allergens and possibly my cat.  I know I have several other food allergies, like some vinegars, many seasonings including MSG, corn starch and many other unknown items.  As long as my diet consists of fruits, vegetables, brown rice and unseasoned meats, I feel fine.   Salad dressings can be some of the worst offenders I’ve discovered. Also deli meats contain fillers.  In fact, at my grocery store, Kroger, I was told that nothing in the deli is gluten free.  It is extremely difficult to eat at restaurants because the waitress or chef don’t know what’s in the food!!.

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Please click here to check out my Online Breast Cancer Store:

 

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On the Breast Cancer Discussion boards, I have met just a couple of women who have developed food allergies during Chemo.  As my Medical Oncologist said, it is rare but it does happen.   Also, I met a woman at a health food store whose friend developed allergies during Chemo.  If you are reading this because you have or think you have developed allergies during Chemo, I would love to hear from you.  Please contact me at b4Denise@hotmail.com   UPDATE:   I am now 6 months post last chemo, and I am  happy to report that most allergies are gone!!  I started reintroducing things slowly.  I still have to watch eating a lot of gluten at once, but a little is okay.  FURTHER UPDATE:  Allergies started coming back after 6 additional months…back at ground zero.

Tips for Radiation during Breast Cancer

My radiation treatments for Breast Cancer will soon be over.  I had 28 regular radiation treatments and now will have 5 boosts to the scar area of my mastectomy.  My treatment was on the left side of my body.  My experience through Radiation was better than I had imagined.  I am so grateful for this.  It is time consuming because you have to go to the hospital or clinic on a 5 day a week basis, but it truly flies by.  Plus, I had amazing Radiation Technicians.  They always put me at ease, told me getting tired was for older people,(since I am in my 50s this made me feel good) and explained every procedure that was done to me.

My skin got red and itchy, but nothing like the horror stories I imagined.  More like a day at the beach and you forgot your sunscreen on more than one occasion.  Of course, I slathered and lathered potions and lotions on it.  Damage to my lungs and or heart was another major concern.  So far so good.   And 6 weeks into it, I am still wearing a bra.

Here are my recommendations for Radiation and Breast Cancer:

1.   Buy at least two 100% cotton tank tops.  I laundered them only in hot water as I didn’t want irritation from laundry soap.   Each day, I put the tank top next to my skin.   I then put on a 100% cotton sports bra in a size larger than what I wear, and inserted my foam boob (did not wear regular prosthesis) between the tank and the bra.  The cotton tank helped with any irritation.  It has been great!

2.  I had all kinds of lotions, but the two that helped me the most were Calendula Ointment (I know sell this in my shop at www.hellocourage.com ),  Hydrocortisone Creme which helped with itching and rash and Miaderm for radiation burns.   The other things I had caused me to itch late in the game (Aloe, Calendula Creme).  My Radiology Oncologist said that happens so just use the Hydrocortisone Creme.  I did and it worked.  The Miaderm helped the redness and burning the last two weeks of Radiation.

Put these cremes on at least 4 times per day – immediately after treatment and 3 other times spaced throughout the day.

Please check out my ONLINE SHOP – www.hellocourage.com    I have many items useful for Radiation and Breast Cancer at reasonable prices.  Click here for more details:

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3)  For bath soap, I used Dr. Bronner’s Organic Bar Soap for babies.  I would lather my hands and just lightly wash the radiated area as to not cause irritation.  I had absolutely no trouble with this soap and probably will continue to use it.

4)  It is necessary that you stay out of the sun during radiation.  That was challenging since I am in the middle of summer, but I did it.  If I had to be in the sun I wore a hat, covered up with clothing, and wore sunscreen on any areas that were exposed.

5)  No swimming in chlorine pools or lakes during Radiation Treatment.  The chlorine is too drying to the skin, and swimming in lakes can cause infection.  My Radiology Oncologist said wait at least 2 weeks after treatment.  If my skin has no open sores or blisters, go ahead and swim.

6)  During Radiation to the breast area can put you at risk for pneumonia or pneumonitis.  One thing I did to help my lungs was to use one of those small, plastic breathing machines called a spirometer.  They always give you those when you are in the hospital to prevent pneumonia.  I found my lung capacity did shrink during Rads, so this helped me deep breathe and expand my lungs. Mine is called a Voldyne 2500.  You can find one on ebay for under $10.00. You should use them 15 minutes a day twice per day.   If you don’t get one of these, at least do deep breathing exercises.

7)  If you have Lymphedema or are at risk for it because of lymph node removal, see if your hospital provides lymphatic massage or see a lymphedema specialist.  I was fortunate to have both during Radiation Treatments.  It helped keep my Lymphedema arm under control and the massage helped the radiated areas be more supple and less like fried, crisp bacon.

8)  Do exercise stretches of the affected area several times a day.  My arm and breast area were particularly tight in the morning.  The first thing I did upon waking was do stretching exercises.  This will help you in the long haul, and help you feel less pain.

9)  I really was fortunate and wasn’t that tired during Radiation.   I may have gone to bed a little earlier, but it was nothing like Chemo Fatigue for me. Chemo Fatigue was debilitating.  Radiation Fatigue was not.   If you are tired, rest.  You are still in the middle of cancer treatment.  Your body has been through so much.  If it cries out for rest, do it!

New Opportunities after Breast Cancer

I remember the minute I started this Blog.  It was about one hour after I got home from my official Breast Cancer Diagnosis on October 17, 2011. Intuitively, I knew this journey was bigger than I was.  I knew I needed to help others while helping myself and that it was necessary to chronicle my experiences.  If I did not, I knew I would never have the courage to make it through the daunting treatments.  Writing this Blog has been so healing to me not only in being free to express my emotions and experiences, but because hundreds of women from all over the world have written to me and told me how I have helped them because “I understood”.   That is certainly a great reward.

Sometimes life hands you some pleasant and unexpected surprises.  Several months ago, an editor at Ladies Home Journal happened upon one of my Blog articles.  It was through a series of coincidences that seems like only heavenly intervention could make a reality.  Now one of my articles is being printed in the October, 2012 issue of Ladies Home Journal.  I am thrilled!

On a beautiful July evening, Ladies Home Journal sent out an amazing Chicago Photographer, Greg Ruffing,  to take photographs of me.  What an experience!  I felt like America’s Next Top Model Older Version!  It was fun, exciting and tiring.  Those models work hard I discovered!   It was a 3 hour photo shoot!   I changed clothing and everything!  Plus, although it was 85 degrees, I had to dress like it was October.  Oh, well, it was worth every bead of sweat!

I am rejoicing for this opportunity.  It has always been a desire of my heart to be published in a national magazine!  And now it is happening in the magazine issue one year after my diagnosis.  God gives us unexpected gifts when we need them the most.  My heart is full of gratitude!

The Devastation Left by Breast Cancer

Two years ago, a deadly EF-4 tornado hit the town I grew up in leaving behind a path of destruction many miles long.  After the area was entirely rebuilt, a local television station interviewed a woman who had lost her home and everything in it.  She said that although it was nice to have a new home, the devastation left by the tornado would always be with her.

Today, after my daily radiation treatment, I went to Dillard’s Department Store.  I had not been in Dillard’s since a week before my Breast Cancer diagnosis which was 9 months ago.  Just walking around the store, I felt a deep sense of sadness.  I couldn’t put my finger on why.  Then on the drive home, I returned the call of my oldest friend  I’ve known since Kindergarten.  She inquired how radiation was going.  In relaying part of what I was experiencing, she stopped me and said, “Well, it is better than the alternative.”    Immediately this wave of emotion hit me.  I began to tell her that her comment made me feel upset and angry, and I knew she could take my telling her so.  She didn’t mean to upset me.   But I really didn’t know why I was feeling that way.

Although the major part of all of my active treatments – Mastectomy, Chemotherapy and Radiation – are now coming to a close, I am left with many challenges.   The loss of a breast and the looming thought of reconstructive surgery is always on your mind.  Lymphedema is in my left arm which needs daily attention with limited physical activities with that arm unless you wrap it with uncomfortable wrappings and tape or a compression sleeve.  I have heart damage and subsequent medication due to Chemotherapy and Herceptin, and lung problems with a chronic cough.  Then there are the food allergies to wheat, dairy, and soy which I am reminded of at every meal and the comlexities it involves, thank you Chemo.  Now there is the permanent damage done to my skin because of Radiation which I will have to be constantly vigilant the rest of my life.  The bone and joint pain that plagues me now is also a leftover from Chemo.  There is the wondering if I will ever be able to take my miracle drug Herceptin again, and praying my heart heals so I can.  And the biggest deal is the daily concern about recurrence and metastases of Breast Cancer.  That is never far from your thoughts.  Ask any Breast Cancer survivor.  And these are just the physical issues.  And thank you cancer, there are changed relationships, relationships that are over, and new relationships that need fostering.  And there is the financial loss of Breast Cancer – loss of income, increased insurance premiums, and the payment of back deductibles.

Now I understand why I felt so upset walking through the department store.  The last time I was there, I had none of these issues to deal with and my soul remembers feeling free from these concerns.  And I also get why I felt so angry at my friend when she said it was better than the alternative.  On your weakest emotional days, which are few, you are not quite sure to be brutally honest.  On most days you are thrilled to be alive no matter what you have to manage.

After reflecting upon the comments of the woman from the tornado, I certainly understand just a little more what she was feeling.  Although I will always be grateful to make it through Breast Cancer treatment alive, the devastation will always be with me.