Tag Archives: chemotherapy

Good Friends Make All The Difference

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Today I had breakfast with a dear friend and her daughter, whom I am also friends with.  Friends come in all ages and although this woman is my mom’s age, over the past 10 years we have become friends. So over I went at 9 am, to a feast fit for 20 rather than 3, but Cheryl is an amazing cook, so I gladly ate some of everything.

Food aside, the best part was being out of the house and the conversation.  Since I am no longer able to drive, I have at times felt housebound.  Being sick for a few weeks didn’t help the situation, but now that I am better, I miss driving.  It was nice walking up the street to her house and feel the air on my face and hear the birds singing.  Cheryl told me all about her cruise to Italy, which she hated, and it was so healing to laugh, and be able to focus on something other than my fatigue and side effects.

Walking home, the sun was shining and it felt great to be out.  I had more energy, and felt my spirits lifted.  My mind was clearer, and it felt good to take in some nice big breaths of springtime air.  I realized that this is what I needed all along.  Cheryl, Danielle, and I made plans to restart our book club, play cards, and have movie nights in order to get me out more, as well as give Cheryl company which she loves.  I think this will help me so much because I cannot just stay cooped up in the house waiting to feel better.  I have to be more proactive in my recovery, and getting out more is just thing to do.

When you are going through cancer treatments it’s sometimes hard to gather the strength it physically and emotionally takes to get out and socialize.  The temporary way you look can make you want to hide, and fatigue can make you just want to sleep.  Remember that these are temporary side effects.  The fatigue will fade even though it may take some time.  Exercise such as going for a short walk, or doing some light housekeeping can actually help your energy level, and build stamina. Socializing and keeping in touch with friends is important.  Not only will your friends make you feel beautiful, they can make you laugh, and take your mind off your problems.  This is so important during treatment because its a reminder that you are still you, just stronger. XO

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SCAN RESULTS AND THE FUTURE!

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Sounds quite mystical doesn’t it?   Eh, it won’t be that exciting or prophetic sorry to say!  I met with my oncologist this morning for my scan results from Monday, and to get my treatment plan started for the cancer in my collar bone.

The scan showed the usual lymph node involvement in my collarbone, neck and trapezius muscle on the right side. There were a few tiny bone lesions in the collar bone as well.  It has never been in my bone, but they are so tiny and slow growing, chemo is not required at this time.  The Dr. was actually very pleased that the cancer was not anywhere else in my body other than where it is after being off all treatments since 12/14.  On next Wednesday, I will begin Herceptin and Perjeta since the cancer is still HER2+.  I will get an infusion of this combo, once very 3 weeks only and there are no side effects at all!  I have tolerated these well in the past so I am happy there.

To strengthen my bones from future fractures or breaks, every 6 weeks they will be adding a medicine to the Herceptin/Perjeta combo called Xgeva.  This will lengthen my session by an hour I think, but in the scheme of things, no biggie!  I also have to begin taking 2000iu of Vitamin D as well as calcium to build up my levels.

So that is it in a nut shell.  I am very pleased with the results, and with my treatment plan.  I truly am thankful to Jesus whom I just dumped this on and who gave me the strength and peace to deal with whatever results came in.  I know his plan is working and sometimes you just have to say you need help, and give it over to Him to take care of.

Thanks for all the love and support as usual.  I’ll be writing about 3-4 book reviews next so keep posted to see them!  Have a great weekend and a Happy Easter! XO

 

 

New Hurtles to Jump Through

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I want to apologize to my readers and followers for not posting in so long.  I have been dealing with more cancer related health problems, and my mind has been focused on that.  The tumor in my collarbone and neck is getting larger each week and is painful.  It limits movement of my head and shoulder, and sleeping on my right side is a no-no.  I met with my new Oncologist and liked her very much.  She is friends with my old Oncologist from Cancer Treatment Centers of America and they trained together which was exciting to hear.

Dr. Gupta wants me to have a biopsy done on the 16th to see if the tumor markers are still the same.  Is this new growth still HER2+ or is it now negative?  Has the estrogen and progesterone changed to positive or am I looking at triple negative BC?  All of this information will determine future treatment, choices in medicines and availability in clinical trials.

Meanwhile, I had another MRI of my brain which showed between 5-10 tiny lesions throughout my brain.  Because of the high number, I cannot have the cyber knife radiation as I did last year with the two small lesions on my cerebellum and frontal lobe.  On Monday, I began Whole Brain Radiation and will have 15 treatments in total. The whole procedure takes about 4 minutes which cracks me up.  I have been on the steroids since Saturday to reduce the risk of brain swelling.  So far the flushing has not been too bad, and the headaches are gone.  I do have more energy which hopefully balance with the fatigue I am going to feel from the  radiation. Some other side effects from the WBT (whole brain therapy) will be hair loss, either a lot of thinning or total loss (third time for me!), dizziness, balance issues, nausea, vomiting, hearing and vision changes, and scalp irritation/burning.  I will be sharing what I am going through here on this page daily.

Hopefully, this WBT will work, and after my biopsy another PET Scan of my body will show it is nowhere else in my body except the collarbone. If the brain tumors don’t shrink or go away, I could be looking at seizures and strokes as well as a 6 month life expectancy, give or take a month.  I am not focusing on that.  I am remaining hopeful and positive this will work and they can continue to keep the cancer under control for many years.

I have prepared my family and myself for what outcomes we could be dealing with, but my support system is strong. and I am blessed to have many wonderful family members and friends praying for me and fighting with me.

Radiation is at noon each day M-F, and so far so good.  I won’t feel any side effects until after a week so hopefully they are minimal.  More tomorrow!

 

Books I Read for Comfort

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I love to read.  I have loved reading since I was 9 and could ride my bike to the library downtown three times a week during summer break. Throughout my 41 years since, I have read thousands of books and there are a few that have become my favorite. The favorites are books I have read multiple times because when I read them, they calm me, make me happy or feel safe.  Through breakups, bad times as a teen, whatever the case may have been, this beloved group of books has seen me through tough times.

When I became a mother, I didn’t have the need to run to those comfort books as often, and they became the “books to read when you don’t have a new book”. When my oldest, Kait was in second grade, that now famous boy wizard entered the literary scene.  Kait and I read the books together.  We would go to the midnight book reveals and race home to begin reading that night.  As she grew older, we would discuss plots and search for hints by rereading the earlier books.  We watched the movies as they came out, and would either praise how close they stayed to to story line, or tear them apart for leaving major plot lines out.  Harry Potter became our shared obsession and it bound us together in a special way.

My two younger girls didn’t get this incredible gift.  They watched the movies first, then read the books.  My youngest *gasp*, didn’t want me to read the books to her because she wasn’t into them!  That did depress me for a few weeks/months/ok years, but I’m in a good place now.

While I was going through chemotherapy and radiation, I was incredibly fatigued, and at times nauseated.  My joints ached and my vision would get blurry after reading for 25 minutes.  The one thing that helped get me through the day, or sleepless night was having Kait read Harry Potter to me.  Sometimes we would go in order, and other times we would just pick a favorite. Kait has many creative talents and one of them is picking up foreign accents easily.  She would read the story in a British accent and I would close my eyes and be transported to a magical place where there wasn’t cancer, or pain. Listening to these books gave me a better sense of comfort and relaxation than any pain killer did.  It had the added bonus of bringing forth years of happy memories I shared with my daughter.

I feel sorry for people who don’t like to read.  They are missing out on so much. God bless authors and books!

Strength

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Throughout my cancer journey these past 5 years, I have been called “strong” many times.  So much so that I was wondering what does it even mean to be “strong”?  Where does strength come from?  I’m not talking about physicaI strength here. I am talking of emotional, spiritual, and mental strength.  The inner type we all at one time or another, have to lean on.

Having been in and out of hospitals and cancer centers, I have seen unbelievable strength come from some of the frailest of sources.  Is strength in that patient, enduring surgeries, and radiation burns and blistering?  Is it dealing with chemo side effects of vomiting, and fatigue so bad they can barely walk to the bathroom without having to lie down? Are they “strong” when they shave their head because their hair started to fall out in clumps? Or maybe they are strong when the doctor tells them their cancer has spread and the treatments they just struggled through the past 8 months didn’t do a thing.

Is strength in that patient who only weighs 80 pounds now, and sleeps 20 hours a day but still gets the poisons of chemotherapy pumped through their frail veins hoping that a miracle will take place?  Or is the one with the strength her caregiver:  Her husband who holds her hand and tells her funny stories just to see the memory of a smile in the face he loves;  who waits until she is asleep to get something to eat, or to escape to his car to cry and wonder how he will live without her?  Is the strong one the parents who watch their 50 year old “baby” suffer through constant pain while still worrying about how everyone else is doing?

Is inner strength reserved for only those who have suffered great loss?  Do people consider me “incredibly strong” because on top of living with stage 4 breast cancer, I live with the loss of my only sibling; my sister Kim, who was strangled to death by her husband of 20 years?  Does taking in my nephew and testifying at a trial while having another round of chemo make me Supergirl?  I don’t think so.  Yes I have lost much, but there are people in this world who have suffered so much more than I have.  Is the homeless man who once had a lucrative job but got downsized and lost all he had, surviving another winter on the streets “strong”?  Or is the man who brings him a hot coffee every morning the “strong” one because he knows this homeless man won’t accept more than the coffee, and he worries that one morning his friend won’t be there?

Strength, I have learned comes in many different packages and refuses to fit any set mold.  It is in the tiniest of things and in the greatest of things.  It comes from places you wouldn’t expect it to. It appears in you when all your life you have thought you could never survive “that”.  I don’t think of myself as strong.  I think I am just doing what I have to do to live the best life I can day by day.  I mean, when you think about it, what’s the alternative; digging a hole and lying in it waiting for death?  Well that’s stupid!

I hope that none of you has to call on your inner strength for anything big.  But if you do, or if you are going through something that is requiring a lot of strength at the moment. know you are not alone.  I pray you keep finding strength to deal with what you must.  I pray that all of us can reach a day when we can just be normal, boring, “weak” people!

Barb

Why Books Give me Hope

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When I started this blog and was thinking of a name, I wanted something that would be able to encompass the three things I wanted to blog about, writing, books and cancer.  I also wanted the title to have some meaning.

Throughout my 5 year journey with breast cancer, there have been many times I have been so fatigued and exhausted from various treatments, that the only thing I could do was read.  Reading didn’t require physical exertion, and it helped take my mind off of my pain, nausea, fear, and worries.  Reading became a symbol of hope to me.  I was able to read about people beating worse diseases than I had, and living a better life than they had before.  I could visit times and places where cancer didn’t exist.  I could read about new treatments on the horizon for metastatic breast cancer which gave me hope.  Most of all, I could read for fun.  That was the only fun I could have at the time and I was so thankful that I loved it so much.

Books became my caregivers when I was alone in Philly having radiation for two weeks and couldn’t see my kids.  My books kept me from sinking into depression when I felt alone.  Old favorites like the Harry Potter Series were reread when I was at my worst because they were so familiar to me, I didn’t need to focus on them.  On days I felt strong, I would tackle a heftier subject matter.  Whatever it was, it provided me with a distraction during the bad times and made me smile and appreciate what I had when times were better.

Living with Cancer isn’t fun, but I can think of hundreds of worse things to have to deal with in life.  I never regretted getting cancer, and I still don’t.  I regret how aggressive it is, sure, but I wouldn’t change things.  Cancer has made me stronger, it has made me realize what is truly important in my life, and it has been a constant reminder of how short life is and why we shouldn’t take things for granted. I am a better person, a better mother, and a better wife thanks to cancer.  As long as I have my books around me, I will be ok.

 

Merry Christmas!

 

Facing The End

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Last February when it was discovered I had a tumor on the base of my brain, and then 2 months later another one on my frontal lobe, I was forced to face the inevitable that I was going to die from cancer.  I always knew I would, but when it was only in the lymph nodes I could fool myself that it would just stay there and I could live another 2 years.  All that changed when it spread to my brain.  Meeting with my oncologist cemented the fact that there was not much she could do.  Because my cancer was HER2+, it was very aggressive and spread easily.  There are only a handful of targeted therapies made to suppress the HER2 receptor and I had been on all of them.  My only option was to try yet another chemotherapy but they were harsh and none of them would cross the blood brain barrier.  After 5 years of being on some type of chemo or targeted therapy, of losing my hair twice, living with constant bone pain, fatigue, and nausea I had had my fill of drugs.  My body was breaking down from all of the poisons.  That’s really what they are you know, poisons that kill the cancer but everything healthy too.  My other option was palliative care which means they keep you comfortable and deal with your symptoms as they come up.  This was the way I chose to go.

I haven’t been on chemo since 12/14 and they removed the second brain tumor in May.  I haven’t seen a doctor since then.  I wanted and needed a break.  I wanted to feel like myself again and give my body time to purge the drugs and heal itself.  2 months ago, I began to have serious pain in my breast with the implant and my shoulder blade.  After some trips to the ER, it was discovered my implant had ruptured and that there was another tumor in my clavicle. I decided to switch my care from Philly to a group closer to home.  I have surgery on Monday to remove the implant and I see the new oncologist on 1/6.

I don’t feel good anymore.  I am exhausted all the time.  Walking up the stairs or even to the bathroom, leaves me short of breath.  The pain in my back and shoulder never ceases.  The pain killers aren’t helping much and I can’t eat or sleep.  I find myself staring at my three girls.  I’m trying to memorize every line on their face so I can take it with me.  I’ve left letters for them, filled with just a fraction of the things I need to tell them.  How do you say goodbye to the best gifts you ever received.  My 21 yr old Kait and my 18 ye old Erin are moving on with their lives and I know they will be ok.  It’s my 14 year old Emma that I worry about.  She is such a sweet, loving young woman and we have an incredibly strong bond.  She is the one who tells me I’m the most beautiful woman in the world.  She often says she ” doesn’t know why she loves me so much, she just does’.  I feel like its unfair that I had the least time with her.

I don’t want to have cancer anymore. I want to wake up and have my life back again. I want my dreams to be realities.  I want to finish my book and I want to go to Europe.  There are too many things I have left to do.  I want to look in the mirror and see two healthy breasts, not a deformed, hard form with scars everywhere.  I want my husband to look at me like he used to.  I don’t want to hear Emma cry “I can’t lose you mom”.  I have begged God to heal me. I guess he’s busy this time of year.

My family has lost so much in the past 5 years. My only sister was murdered by her husband on the 1 year anniversary of my mastectomy.  In that moment my life was changed.  I had to tell my parents, and my two nephews who were now orphans.  They went to school that morning and never returned to their home or school again.  We took them in.  Their father’s mother stole everything from them to pay for her son’s defense.  We had to wait 3 years for the trial, and in February of 2014 he was finally sentenced to 30 years with no parole.  During this time my youngest nephew became seriously mentally ill.  He had always had some minor problems, but they became dangerous once he lived with us.  After months of searching for answers and looking for help, he finally  had a breakdown and was committed for observation for a week at a clinic.  We were told he could no longer live with young girls around and he needed to be the only child in a house.  After two years of living everyday in fear and anxiety, my nephew went to live with his father’s uncle in Virginia.  Things returned to normal.  My older nephew, Matt stayed with us and is now away at college and happy.  My cancer returned three times from when Kim died, until her youngest son moved away. Stress caused it to come back, but I still had faith I would win this battle.

So now I am facing the end of my life.  It will be sometime in the next 6-9 months most likely.  This will be my last Christmas with my family.  There will be a lot of lasts I will have to deal with.  There will also still be firsts.  My daughter Erin’s first prom, and God willing her high school graduation.  I know I have been blessed, and I truly am thankful for each day I have been gifted to live in this world.  I just wish I didn’t have to make arrangements for the end.

Overcome With Fatigue

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For me, the side effect from all the medications, chemo, radiation, and pain killers has been fatigue.  Fatigue is different from being sleepy or tired.  It is a feeling of overwhelming exhaustion where you cannot move without great effort, you have to fight at times to stay awake, and your thinking is clouded.  It prevents you from not only doing day-to-day activities, it also stops you from being part of life.  You miss doing things with your kids.  Your date nights stop happening.  Your days are spent in bed sleeping off and on for hours at a time losing track of time.

For the past 8 weeks, I have had to be on pain medication to deal with the pain in my shoulder-blade and implant.  There are days I am feeling better so I can skip a few doses and remain in the present. But most days I am confined to a couch or bed trying to escape the constant pain through sleep.  Next Monday I will finally have this ruptured implant removed and hopefully I won’t be in pain any more.

Cancer sucks, plain and simple.  There is not much good about it.  The only positive thing is that it has made me realize how precious life is and to live every day to its fullest.  I spend more time with my children and I find myself staring at their faces, memorizing eve line and freckle.  Cancer fatigue builds up over time due to the effects the treatments have on your body.  It gets a bit better once treatment ends, but never completely disappears.  As I am typing this now, I am fighting to stay awake.  My head bobs up and down as I wake myself up to stay focused.  My vision is getting very blurry, and I feel very weak.  When I complete this entry, I know I will have to nap again.  I will set my alarm, because I have to take my 14 yr old in for her physical.  My oldest will drive us since driving has been out of the question.

If you have been recently diagnosed, go easy on yourself.  Sleep when you need to.  That is when your body heals itself.  Try not to forget to eat 6 small meals a day.  It is essential to fuel your body so it has the strength to heal itself .  Also try to get at least 20 minutes of gentle exercise in each day.  Take a walk, heck the weather on the east coast is warm enough, do gentle yoga and stretching, ride a stationary bike, whatever gets you moving will actually lessen the fatigue.

Caregivers, please be patient with your loved one.  They aren’t being lazy, they aren’t taking advantage of the situation to sit around and eat bon-bons.  They have a disease for which there is no cure. Sure there may be times when they may go into remission and stay there for years, but there is a higher chance that it will be a chronic illness they will fight for the rest of their life. Be patient.  They might have planned a great dinner yesterday when they were feeling good, but today they are exhausted and in pain, or nauseous or vomiting, and they couldn’t cook.  Have a back up plan for dinners.  Prepare a few meals over the weekend to freeze so its easy to just defrost and bake.  Pre-cut all the veggies in a dish and put all ingredients in small baggies, then combine in a large bag and label what meal it is.  This makes dinner prep so much easier. Be loving and kind.  Be empathetic.  Be understanding.  Your loved one did not choose to have this so don’t blame them for being able to do the things they did before.  Give them hugs, hold them, let them know you love them.  People with cancer need physical touch.  It gives them reassurance that they are still beautiful after surgery has removed part of their body.  A massage or back scratch can make them forget their pain because they can focus on something that feels nice instead.  Seek out a support group for caregivers.  This will allow you to vent your frustrations and fears out of earshot from your loved one.  You can have questions answered and gain strength knowing you aren’t alone.  Make sure to have a friend or other family member available for times you are not available.  Make these decisions now so you aren’t scrambling around when it’s needed.

Fatigue is a tough thing to deal with but with good caregivers, and self-care, and being good to yourself, it is manageable.  I wish you nothing but the best on your journey.

Barb

Looking Good While Feeling Crappy

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Going through cancer treatments can alter your appearance temporarily or even permanently sometimes, depending on the treatment. Yes there is the physical changes such as the loss of one or both breasts, but there can also be scars, changes in skin texture, swelling, hair loss and weight gain.  There are also unseen side effects like joint pain, shortness of breath, fatigue, mouth sores and nausea to deal with.

All of these have an impact on your self esteem. Its very hard to feel beautiful when you have no hair, no eyebrows, and no eyelashes. It is tough to find things to wear that look good when the steroids you are on have made you swell and gain weight. Getting ready to go out takes an hour longer by the time you find something to wear, and put on your makeup.

Here are some things I did that you may find helpful.

  1. The American Cancer Society runs a program called Looking Good, Feeling Better.  I am torn on whether or not to recommend this program.  I went to one shortly after my mastectomy and first chemo treatment.  I had cut my hair very short because it was starting to fall out and I wanted to be in control of that one thing.  I was given a bag full of makeup in my skin tone and most was very expensive as well as a good color.  For the makeup alone it is worth going.  They give you tips, and everyone puts on their makeup while getting help if needed.  The problem with this was the talking between the women while they were putting on makeup.  They were all talking about what stage their cancer was and what chemotherapies they were on.   There was a lot of  opinions on what they had heard, what their friends went through, and from what their doctor said.  I sat there scared whenever someone mentioned the type of cancer I had and when I heard horrific stories of side effects from the chemo I was on.  I was new to the breast cancer scene so I was soaking up everything like a dry sponge.  It really frightened me and I came away from it scared and worried, not feeling better at all.  So if you want free makeup along with ideas on how to apply it I suggest you go and get your bag and put some earplugs in or listen to music.  If hearing about others circumstances doesn’t bother you, then definitely go.

2.  Buy a good wig in your hair color and close to the style you had. Hats and scarves are good, but they scream “I am bald”.  Some women choose a wig that is nothing like their original style because they think its their chance to see what it would be like if they had a different color or style. This also isn’t the best choice because if you have black hair in a short pixie, and you pick a long, curly, blonde wig, people are going to feel uncomfortable because they won’t know if they should comment on your hair or just pretend it was always like that.  Personally I stuck with a wig that was close to my color and style.  This allowed me to look like me, and that was what I wanted.

3.  Buy a good eyebrow kit and false eyelashes.  If you wear no other makeup, do your brows and lashes at the very least. Eyebrows define the shape of our face and draw the focus to our eyes where people look.  Without them, all people can see is that you have no eyebrows and they wont be able to concentrate on you.  It is sad but true.  False lashes take some practice but for a special occasion they are worth it. Do not get individual lashes, these are for pros and are hard to do.  Get the strip in the length you had with mascara on.  The really long ones will make you look like a Manga character.  On days you go lash-less, draw your eyeliner in brown or black really close to your lash line, making small dots where lashes would be.  This really gives the impression of lashes and makes your eyes stand out more.

4. Wear lipstick or a tinted gloss.  This will add color to your face especially when you are pale or sallow looking.

5.  Buy some basic pieces of clothing in a bigger size to accommodate your changing body.  This way you can be comfortable and look nice until treatment ends and you go back to your old weight.

6.  Quit the manis and pedis.  This may be very hard for some women but it is important.  Many chemos cause your nails to harden and split while the nail bed dies causing the nails to raise up and sometimes fall off.  Nail polish and gel tips are very bad for your nails and the harsh chemicals dry out the nails.  Also you risk infection from the tools and tubs which you want to avoid with a lower immune system.  Rub olive oil into your nails, toe nails and cuticles twice a day.  This will keep them soft and healthy.

7.  Be sure to moisturize your skin using either Lubriderm, or Eucerin.  These two are the most recommended by doctors.  Stay away from highly scented lotions that will dry out your skin even more.

Lastly, wear a smile!  Remember that this is only temporary and soon you will be back to normal.

-Barb