Tag Archives: radiation

Health Update

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I wanted to be open and honest with all of you, as I have been.  I do not know how much longer I can keep up with this blog.  Typing has become challenging with only one hand, and now that it shakes and is weak, typing is hard for me.

My health is declining.  I am still awaiting to have another MRI to see if the whole brain radiation worked or not.  The MRI should be within the next 2-3 weeks.  Part of me knows it didn’t work.  I have bad neuropathy in my toes which is only a side effect of the brain tumors;  My right eye is closed more than my left which it never was, and it hinders my vision when I am reading; my head feels full and heavy and I get sharp pains frequently in the areas that I know tumors are. I have a lot of weakness in my legs and walking is difficult.  My balance is off and my legs are shaky. My right arm has become even more  numb with a big increase of pins and needles in my hand and fingers.

I am unable to do much anymore.  My days are spent on the couch since I can no longer drive, and walking for any distance isn’t a reality. I am not telling you this for pity.  I tell you this because part of my journey when starting this blog last year, was to be honest about my life with breast cancer, and what I would be going through.

I don’t eat much anymore because I either have no appetite, or I am nauseated too much to eat.  The nausea meds don’t work anymore.  The fatigue is debilitating.  I fall asleep constantly and  feel tired all the time.  I feel like jelly inside, and dead.

Emotionally I have good days and bad days.  I’m afraid although my faith is keeping me strong.  My worries are for my three girls and my husband. I don’t want to leave them.  My youngest who is just 14, is especially sensitive and is constantly telling me to not leave her, and how she can’t lose me.  It kills me.  What do I say?  How do you answer that? I think she’s beginning to accept that I am not going to see 80, because the other night she asked me to always be with her even after I die. I told her I’d find a way to be with her always until she was an old lady and ready to come see me in heaven. Things like this leave me empty and in tears, but then I pray and I am comforted and my strength is renewed.

OK so there will be some changes on the blog I want to make everyone aware of.  I am no longer going to do book reviews other than possibly a book I read.  I may not post as much as it depends on the shaking in my hand. I will let you know as long as I can.

If the tumors have not responded to the radiation, there is nothing left to do.  I don’t know what the effects or what the progression will be. I have been told I could have seizures, strokes, confusion, loss of hearing, and loss of speach.  If I reach the point that I can no longer type or communicate,  My oldest daughter will keep you update on what is happening and will let you know when I pass.

I ask for your prayers.  I remain hopeful there will be a iracle and I go into remission for a long time. Thank you for your support and kind words. xo

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

Half Way Done!

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Today was number 7 of 15 radiation sessions, so I have basically reached the 1/2 way mark. Thank God because I can now see the finish line to this first phase of what I am sure will be a long treatment.  Tomorrow I also have my ultrasound led biopsy to re-stage the tumor in my collarbone and neck.  I just want to get that analyzed and then start on treatment to get rid of it.  The pain it causes is never ending, and I am weary from it.

The steroids are making my legs very weak.  This happens often because the drug makes you have a decrease in muscle mass.  I am trying to do some weight lifting to protect the muscles in my thighs, but it isn’t easy.  Walking is slow and there are times I find it hard to have the strength to go up a step.

Emotionally, I have settled down with a positive attitude and trying not to waste my thoughts in fear or worry.  I find my moments of quiet prayer, reflection, and meditation are life saving. My family has been so helpful and loving.  Everyone has been helping out so things are running smoothly.  It has allowed me to just focus on getting well, and getting through this.

I am reading a lot, and will be posting a review on a book I liked shortly here.  I nap when I need to, take my meds, and be sure to eat healthy in frequent small meals to help with the nausea.  I was put on an anti nausea med yesterday which helps so much.  I as also given vicodin to try for the pain.  I have to stagger it with the tramadol because it really doesn’t work on its own, but it is helping me sleep.

That is about all to report for now.  I will be writing about my biopsy next time so those curious can get a blow by blow account of what they do.  Enjoy your day.  XO

Radiation update: week one

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Well tomorrow will complete my first of 3 weeks of Whole Brain Radiation.  I lost 4 pounds from last week which I am glad for but hopefully this isn’t a sign of deterioration.  That’s 25 pounds since I entered the hospital on 1/12 with my staph infection.  My vitals are good and other than my growing fatigue,some temple and jaw pain, and a dull headache, I am so far so good.  The Dr. saw me today and doesn’t expect me to have major side effects which relieves my stress.

I am surrounded by a strong support system which really has helped me so much.  It is funny though how the ones the most distant from me whether by distance or just by knowing me, are sometimes the strongest supporters.

Faith has always been a very private matter to me.  I believe it is a personal choice who to believe in or not believe in.  Those choices are a human right and should be respected and left alone.  That said, in my 40’s I began a spiritual journey in search of finding something that would give my life joy and a deeper relationship with my God. I finally feel at home and at peace with my destination, and it strengthens me and gives me peace as I deal with these oncoming issues.  I never would have found the inner strength to deal with cancer and my sister’s murder in the past 5 1/2 years, were it not for my faith. Sometimes it is hard to see why God challenges us in numerous ways.  But as I reflect back, I can see a glimpse of why things happened the way they did and how they have made myself and my family closer, and better people.

I hope you all find joy and peace in your days and remember that there is always something to be thankful for and to smile about! XO

 

 

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

Insomnia Ramblings

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I think I am becoming a vampire or a nocturnal animal.  I will go with Vampire because it’s sexier.  You may ask why?  Is she crazy?  Did the cancer cause another tumor on her brain?

Let me explain.  For the past couple of years I have noticed changes to my sleeping patterns.  I used to go to bed early. Like 9 to 9:30, and wake up at 6.  Slowly, my bedtime got later and later.  I found myself awake until 11, then 12, then 12:30.  Then I found myself dragging to get out of bed by 6.  I had to take a nap, which at times would last for 2-3 hours. During summer break when the kids were off from school, I would sleep until 10:30 and love it. The problem was that when school started, I was comatose in the early hours and couldn’t wait for them to be gone so I could run back to bed.

Nowadays, I find that the earliest I can go to sleep is 1 am but most of the time I am falling asleep around 4:30 am and going back to bed when the kids leave, until 11 am or later.  There are many nights I get no sleep at all.  I find myself awake all night and sleeping all day.  This is why I think I am becoming a vampire.

Since my surgery on 12/21, I have no appetite and when I do eat, I feel nauseous for a few hours after.  I have not tried to drink blood to see what would happen, but since I won’t do that, I will never know if it helps.

Lack of sleep is affecting my vision, my balance, my thoughts, and my ability to think logically.  I live in a perpetual state of exhaustion that goes beyond fatigue.  Luckily I no longer drive since I have had to be on pain killers.  That would be scary!

Several of my followers on Twitter also suffer from sleep problems and we share our trials and tribulations on a weekly basis.  Perhaps if they become creatures of the night also, I can have a coven and we can live in a creepy old Victorian mansion and survive on Twitter, Netflix, and blogging throughout the night until exhaustion overtakes us and we fall asleep.

Insomnia sucks.  It is one of the dreadful side effects of having cancer. Either you are wired from the steroids they give you with chemo, or the joint pain prevents you from relaxing.  Once off of treatment, you can become stressed and anxious from too much ‘what iffing’. You can have residual bone and joint pain from the chemo and radiation treatments you have had. The thoughts in your head never shut up and they keep you awake.  You find yourself doing research about new treatments and clinical trials until your eyes are burning, but your brain is wide awake.

What the hell; if I do become a vampire, I will be impervious to disease and live forever.  Not a bad thing at all! Sweet dreams. xo

-Barb

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.

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