Tag Archives: exhaustion

Pushing Through A Tough Week


This week has not been fun at all. Still reeling from this chest cold that has kicked my ass has made me yearn for how I felt before.  I can honestly say I have never been this sick. You find a new respect for Oxygen when you cannot breathe. Every move I make or step I take leaves me winded and sucking for air.  Lung x-rays are clear, but Doctor hears wheezing. The Albuterol helps keep airways open, but the side effects of shaking, even in your legs, weakness, and racing pulse are not too fun. Then for a while I feel fine, but then the ,chest tightness moves in and I realize that not coughing for hours isn’t good because as soon as those airways are operational, the coughing jags start and the wheezing comes forward.  I cant even sleep because the weird sounds of the wheezing upon exhale, wake me up!

I think the hardest part of this  entire experience since the implant rupture in December, has been keeping my spirits up and my faith unwavering.  It’s been really hard for me to deal with the roller coaster of emotions and health problems all together.  I get bad news, then I get great news and just as I am feeling happy and safe, bam! I get hit with something bad again. It wears me down and then the mental stress makes my body weak immune wise which is likely how I got this damn chest cold.

I am now on a very strong antibiotic which is slowly working.  Each day I am a tiny bit better, but the weakness  in my legs is going to take a while to build back up. I will continue to push through this as I start my Herceptin and Perjeta for the cancer next Wednesday and want to be healthy enough to start treatment.

Pleases keep me in your prayers, positive thoughts, healing white light, whatever you believe in.  I could use all the good health vibes I can get!

Much love,

Barb xo


Books I Read for Comfort


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!

Facing The End


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


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.