What is Radiation like during Breast Cancer

Oh how I dreaded Radiation.  Probably more than Chemo.  My aunt was a Radiation Tech back in the 1950s and told me all of the horror stories.  However, my actual experience has been far better than I hoped it would be.  Thank you modern technology.

After your initial CT scan, not a diagnostic CT, Radiation Oncologist maps the area.  The Rad Onc team figure dosage, and try to miss your heart and lungs and in my case the esophagus.  That’s all scarey, but I don’t have any control over it.  I chose my physician and facility wisely, and that’s all I can do.

The 5 days a week going to Radiation is tiring, but it goes by quickly.  I am half done (almost) and it does fly by.  When I get to the hospital, I get called back usually right away, take off my upper clothing, get under the machine in my custom fit body mold that was done previously.  The Rad Techs line you up with the miniscule tattoos that were placed on mapping day.  There are laser beams located in the radiation room that align with your tattoos, and you are in alignment. I’m getting so good I can almost line myself up now.

I really like my Rad Techs and nurse, so I probably talk to them more than I should.  After all those months of Chemo locked up in the house with little socialization, when I get out now, I want to talk!   When they finally can get out of the room, the machine is on a pre-programmed cycle and is pretty much the same every day.  Mine lasts for about 8 minutes. You have to put your hands over your head.  I tend to squeeze the bars too hard and cause myself tension.  It is frightening the first two times, then the high powered machine sort of becomes your friend.  You get used to the sounds and noises.

Once a week, the Radiology Oncologist checks you, your vitals, your skin, and your side effects.  And also once a week, a couple of x-rays are taken under the machine to make sure you are still lined up properly.

Side effects

Skin – every day I slather my lotions and potions on my Mastectomy breast, up to my neck because they radiate up to the upper lymph nodes, under my arm, and on my entire back as treatment is received there as well.

Immediately after treatment I use www.mygirlscream.com which has done really well for me.  It was developed by a woman who had Radiation Treatment for Breast Cancer.   The other lotions I use are Aloe (recommended by Rad Onc), Cortisone 10, and Miaderm which is for radiation burns.  I’ve not used the Miaderm as yet.   I put on the lotions at least 4 times a day.

My skin is holding up well so far.   My sun damaged areas are worse than the areas that never saw the sun.  That surprised me.

No Bra – So far I figured out a way around this rule because I needed to be more balanced.  A Breast Cancer Survivor shared this tip with me, and it works!   I bought an inexpensive 100% cotton thin white tank top (got mine for $5.00 at Walmart).  I wear that next to my skin.  When I launder it, I just wash it in hot water no laundry soap.  Then over that I wear a 100% cotton front-snap sports bra in a size larger.  I then insert my foam boob aka foob in it.  I do not wear my heavy prosthesis.  Then over all of that, I place another cotton tank top.   It has prevented my skin from chafing and not caused any irritation thus far.

Lymphedema – I had 14 nodes removed and 9 had “activity”.  So I get hit pretty hard with radiation in the lymph area.  This can cause lymphedema.  I’ve already had Lymphedema problems, so I see a Lymphedema specialist for massage, and another massage therapist the hospital provides to help the lymphatic flow keep moving during radiation.  This has been a tremendous help to me and thankfully, my insurance has paid for it.

Tightness in my arm is a big problem so it is essential you do your arm exercises every day if you had node involvement and are being radiated for it.  I don’t like this imagery, but I read that radiation can make your muscles curl up like frying bacon, which makes sense.  The minute I get out of bed, I do my stretching exercises.  It helps tremendously.

Fatigue – They always throw “fatigue” at cancer patients no matter what because it becomes a way of life.  But after so much Chemo where I was so drained that I couldn’t get out of bed, this has been a cinch for me.  I do go to bed early and rest an hour or two before my actual sleep time, but the fatigue has not been bad.

No swimming – Since it is 100 degrees here today, the no swimming in chlorine pools is disappointing.  And no swimming in lakes that could cause you infection (all of them in my area of the Great Lakes could cause infection), so swimming is out for me unless a kiddie pool up to the waist.

Drink lots of Water – No one in the medical field told me this, but I figure it is a cure all for everything else, why not!  Plus, it would help lubricate the area I would think!!

Don’t Read the Internet too Much – Oh my, there are a lot of stories out there that will put real fear into you.  Don’t read them.  If you made up your mind to have Radiation, have Radiation.  Make a wise facility choice, and do the best you can.

When Friends Disappear during Cancer Treatment

 

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One woman who reads my Blog wrote me about her long-time friends who frequently stayed as guests at her cottage on the East Coast free of charge.   When she was diagnosed with cancer, these friends never contacted her to offer their help or support in any way.   Eight months had elapsed through her Mastectomy, Chemo and Radiation and total silence on their part.  She was so angry at these friends, wanted to share her pain and ask my opinion.  I told her I had no solutions, but understand this to be the experience of most cancer patients as I have seen thousands of posts on this topic.

As a follow up, I wrote her again to inquire what happened with her “friends.”   She said as soon as she completed treatment, they contacted her and indicated they were ready to go to her cottage with her and her husband, never mentioning what she had just been through.  Basically, she told them what she thought about fair-weather friends and let them know they would never be staying with her again.   She said she experienced much freedom emotionally after this conversation.

I’ve been trying to figure this out since my cancer diagnosis.  Why do some friends step forward and help you immediately in loving, kind and supportive ways, and other friends disappear never to return until you (1) are through cancer treatment and live or (2) until they run into you and have to face you.  This has been extremely perplexing to me.

Two of the top searches on my Blog consistently are:

1)  What to Say to a Cancer patient

2)  When friends abandon you during cancer

So the first group is wondering what to say to their cancer patient friend, and the second group is feeling totally abandoned.  They both care enough to search the internet for answers.

This all has been beyond me until I discovered an extremely interesting article in The New York Times entitled “Coping with Crises Close to Someone Else’s Heart.” http://www.nytimes.com/2010/08/17/health/views/17essa.html?_r=2&ref=health&pagewanted=all

It is a fascinating article which explains that the people who abandon you are terrified that they will attract trauma into their own lives and are desperately afraid to be close to your trauma.  Of course it explains it in much more psychological depth, so I suggest reading the article!

When I examined my wonderful friends and family members who have supported me in unbelievable and consistent ways, I realize that all of them have been through traumas in their own lives.  They are not afraid of trauma.  They have gone through their trials, learned their lessons, and have become stronger and more balanced individuals as a result of them.

People who abandon others either have had no traumas or had traumas, but always ran away from them either by not facing them, running to their addictions, or by putting a happy face sticker over the trauma and never dealing with the psychological or emotional issues.

This article brought me a little peace and a little understanding.  But I am still working through my anger.   UPDATE:    I am now one year post treatment.  I have cleaned out my friend’s closet.  Those who abandoned me are not part of my life now.  If I see them or our paths cross, I am polite.

Herceptin and Heart Trouble

My miracle drug Herceptin has caused problems with my heart.  I’m not happy about it, but there is nothing I can do about it except do what the Cardiologist tells me to do.  My Medical Oncologist says not every Cardiologist gets Oncology and the heart damage it can cause, but the guy he is sending me to does.   Heart problems can be a major side effect with Herceptin which happens to about 25% of patients.  An Echocardiogram is administered frequently during Herceptin infusions to see how the heart is functioning.  Before I started Chemo, my heart was better than most for my age.

Many times, this turns around on its own or after medical treatment with a Cardiologist.  This is all I know!  For once I don’t want to research this too much!    Herceptin is on hold and has been for a month thus far.  My Oncologist tried to console me telling me about a clinical trial in Finland that showed 3 months of Herceptin was just as good as one year.  I’ve had 3 months.  I hope our Finnish friends are correct!!

If you have had Herceptin heart trouble, please comment and let me know your experience or contact me at b4Denise@hotmail.com       Thank you!

Everything you wanted to know about Hair after Chemotherapy

Please check out my adorable and stylish chemo hats at my new online store: www.hellocourage.com   I search high and low for the best, cutest and most affordable chemo caps so you don’t have to do so!

CH-h4flappergraysweatshirt1 I’ve been bald almost six months.  Losing your hair is one of the most CollageOctober2014HUGESalepriceasmarked

devastating things about Cancer.  The worst part for me was cutting the hair really short getting ready for the fall out.  The next worst time is the pain involved with the actual falling out of the hair.  Your scalp hurts and is very painful for several weeks and is a constant reminder of what is happening.  It helps to have a satin pillowcase so the hair doesn’t rip out of your head while you sleep.  Ouch!  The actual shaving of the head wasn’t bad, more of a relief to get it over with after thinking about it so long!   Wearing wigs and scarves takes alot of getting used to, and all of it is extremely traumatic.  That is why I started wearing and later selling Chemo Caps – they look great, feel comfortable, and you get a lot of compliments.  People think you are wearing cute hats an don’t know you are bald.  Plus, my wig was SO HOT!

Hair falls out everywhere on your body, except for leg hair on some people.  Mine never left.  I had to shave the entire time during Chemotherapy.  Is that an unfair deal or what?

Those invisible nose hairs were the hairs I would miss the most.  Who knew?  As a result of lost nose hair, I had major sinus and allergy problems.  As the nose hairs return, I got better! I grew up as a blonde, then my hair turned dishwater blonde in junior high.  I started coloring it then and never stopped.  It has always been blonde.  However, when I got my hair cut really short before the big fall out, it was back to dishwater with a little gray thrown in.  The first chemo drugs turned it JET BLACK.  That was a strange sight for me!  So it left my head black and has always been poker straight.

Before my hair started growing back, I began massaging my head with olive oil.  I read somewhere that helps the hair return.  I’ve had one greasy head, and I’m constantly smelling like an Italian Restaurant!  But good news to report!  It worked!   Five weeks after Chemotherapy has ended, someone else’s hair is returning on my head.  It is now about 1/2 inch to 3/4 inch long,  It is Toddler Towhead with some wave and curl.  Whose hair is this?

Here are my updates: 1)   Two and a half months after Taxol ended, I had white fuzz on my head.  I had it dyed blonde.  My niece, the hair stylist, had to use more toner so it wouldn’t turn red, but it stayed.  The top part of my head was just tennis ball fuzz, but I felt better!

2)   I am now 4 months past my last Chemo treatment.  My hair is 1 3/4 inches long in the back, about 1.5 inches on the sides, and about 1 inch on top.   I have had it colored twice already!!  Had no problems with that at all.  It is a little wavy, but not curly like some people.  I wear my wig about 25% of the time and go without 75% of the time.  On the days I go without, the bigger the earrings.  My hair feels like baby hair, very soft and new!  Virgin hair without any damage!  It feels great!  Another new beginning!

3) Now 9 months post Chemo – I have had 4 haircuts. My roots changed from white to much darker mixed with a little gray.  My hair is 3 to 4 inches long and looks like a cute short haircut. My new hair is much better than my old hair! It has body, is soft and just a little wild. Hair paste is your friend while growing out your hair I have discovered!   You need lots of it! 4) 18 months post chemo —  my hair is back to my old hairstyle – chin length blunt cut.  But I had at least 7 haircuts getting there!   I am happy to report this new hair is better than my old hair – thicker, more body, blow dry and go.  My old hair was never like that, so I am grateful.  Never do I ever complain of a bad hair day.  It is not even in my thought process.  Every day with hair is a good day!

Radiation Treatment, Breast Cancer, and a Sense of Humor

Radiation Treatment began for me – the first treatment of 33 was June 11, 2012.  Previously, I had my mapping sessions, tattoos placed, and met with Radiation Oncologist.  Radiation can be very emotional for many women who have gone through surgery and Chemo.  I cried for 3 days after I met with my Radiation Oncologist because it seemed as if I had just ran a marathon, and suddenly someone was telling me I had 10 more miles to run!

On the first day of Radiation, I was extremely nervous.  It felt like I was starting a new job since I would have to be there every day at the same time for 7 weeks.  I received Radiation Treatment at a local hospital, even though the rest of my treatments have been at the University of Michigan Breast Cancer Care Center which is 60 miles away.  Pure convenience made my choice for me.

Arriving at my first treatment, the very nice middle-aged female tech, Pat, told me to remove my clothing from the waist up.  So I did and laid them on a nearby chair and put on a hospital gown.  Just then, Pat says, “Oh your other tech will be Brad.”  Just then Brad appears and is a very attractive, hunky late 30s early 40s male.  First words out of Brad’s mouth were, “Oops, you dropped something.”    I look down and there is my Foam Boob aka Foob lying on the Radiation Room floor!   I busted out laughing and said, “That broke the ice” and Brad says, “Oh, we see all kinds of things in the Radiation Room!”

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Radiation is a lonely experience.  Although Chemotherapy is hellacious and watching those poisonous drugs go into your body is extremely horrifying, the Chemo infusion experience is very personal and caring with a lot of human interaction.  With Radiation, you have little human interaction, and the rest is just you and the machine that hovers over you and moves all around.   The first day takes more time because the Radiation Oncologist has to check the alignments, pictures need to be taken, and extra care is needed.  On Day Two, it is a “slam bam thank you ma’am” kind of experience!   You get in, take your clothes off, get under the machine, and boom, it does its thing.

The rest of the day you have to slather your breast area numerous times with lotions and potions to prevent skin damage!  There is Aloe, Miaderm, My Girls Cream, Jeans Cream, Calendula Cream, Emu Oil, to name a few!   The other adventurous part of Radiation is you should NOT WEAR A BRA to avoid irritation which means no prosthesis!  Now I have one big boob, and one boobette.  It is almost the first day of summer and has been over 90 degrees on many days.  How is a woman to disguise that fact?

One solution I real about was to wear a 100% cotton tank top underneath a Sports Bra that is a size too big for you.  I have chosen to do this for awhile and see how it works out.  Since I can’t wear my nice supportive bra with my $400.00 prosthesis, this Foam Boob and sports bra is a source of much entertainment!   Foob over Boobette is riding just under my chin while Big Boob is hanging just above the waist!  You have to have a sense of humor to deal with this!  Today, I found myself reaching down my tank top in a public place to shove Foob down and it popped out under Sports Bra!  I mean, you never know where that Foob will end up.  They have a life of their own!  Also, I have been trying to come up with an ingenious way to carry my purse over my chest in an inconspicuous way.

Scarves are another solution, but since I already am wearing my hot wig, two tank tops, a sports bra, a jacket or sweater to help with coverage, adding a scarf in 90 degree weather is strictly to mop up the sweat!    Another coverage solution are vests which are more difficult to find in summer fabrics than winter fabrics.  Wearing my goose down padded vest with nothing underneath would be cooler than what I am wearing!

One side effect of Radiation is fatigue.  Of course there is fatigue. I don’t think it has anything to do with the Radiation Treatment killing your cells. Duh, fatigue is from driving back and forth to daily treatment, dressing and undressing, slathering lotions and potions, and trying to tame Foob and Big Boob into some kind of order!   I didn’t need a scientist or a doctor to figure that one out!

Vacations and Breast Cancer Treatment

In my previous post, I outlined all of my miracles and angels on my way to my vacation destination between the finishing of 5 months of Chemotherapy and the start of 7 weeks of Radiation.   On the flight down, everything went better than planned and “angels” were present every step of the way to help me.

Not so coming home!  I was now a seasoned Breast Cancer Survivor traveler, Lymphedema expert, and had learned how to navigate security with wigs, foobs, boobs, and ports.  Time for a little test!

You know you are in for trouble when you get seated on a jammed pack plane, and the Co-Pilot announces that they “hotwired” the plane for the engines to start on the way down to pick us up.  But sit tight in your upright seat with your locked tray table and we are going to attempt to start Engine #1, then cross start Engine #2!   So we all sit on board, holding our breaths, starting the Rosaries, listening for the turning over of the jet engines, but alas, nothing happens.  Oops, the plane needs a new starter, or so they tell us, so we are sending you all off the plane back to the terminal because it is 90 degrees in the plane, and we’ve already been sued over that deal.

We were told that it would be a 2 hour delay, then a 4 hour delay, and finally a 6 hour delay as the part had to come from Atlanta!   So many people were on connecting International flights through the destination hub city, it was a real mess.   It was my home airport, so I decided to wait it out.

Six and one-half hours later, we boarded the same airplane.  I could see the Mechanics “fixing” the plane out of my aisle seat window which included the mechanics getting numerous rags from their truck and sopping up oil.  Wow, did that give me the confidence!  The rag soaking took another hour and a half.  We took off 8 hours late!  By this time the plane was just over a third full as many people scrambled to take other longer, more complicated routes.  And of course the thought crossed my mind many times that since I made it through all that Chemotherapy, I sure as heck didn’t want to die in a plane crash just when I started feeling better!

What did I learn from this rather grueling and tiring experience?  I realized the flight home was so much like Breast Cancer Treatment.  There were many parallels.

1)  I have no control – I could only trust the people in charge who were the experts.

2)  Much patience is needed and so much waiting along with much discomfort.

3)  Delays happen on your progress and that is normal.

4)  I stayed the course, did what I was told, did not take any shortcuts, and trusted I would safely reach my destination which I did.

5)  And there were rewards–the airline gave me two food vouchers and after my gentle insistence, a monetary credit for the full cost of the return flight.

If you are going through Chemotherapy and can possibly arrange some time away for a vacation before Radiation starts, do it!  You will be terrified to leave home, question your judgment, and be scared to death that you will end up in a hospital while you are gone.  But do it anyway!   I came home feeling like a totally different person..  I left feeling like a battered, beaten, defeated and exhausted cancer patient.  After 9 days away, I felt like a strengthened, seasoned cancer survivor ready to continue the journey