Tag Archives: cancer

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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You Don’t get Cancer Alone

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Due to the recent call to attention on Mental Illness, I wanted to share with you my family’s experience with anxiety and PTSD.

When I was first told I had cancer, and Brian and I had decided on the mastectomy rather than the lumpectomy and radiation, it came time to tell my 3 girls.  It was early November 2010 and my youngest was turning 9 on the 6th.  I don’t remember when we told them exactly.  Was it in October or did I wait until after her birthday?  My surgery was the 18th so it was before then.  Emma, my youngest was my baby.  We had a special bond and still do.  She was at a tough age because she was old enough, and smart enough to know what cancer was, but young enough to still let her fears coast out of control.  She put on the brave face like her sisters did, and didn’t let me see how scared she really was.  I remember explaining to them that the biopsy showed it was very early stage cancer, and the type it was wasn’t even considered cancer.  I would be healthy and this mastectomy would give me a great boob job and we wouldn’t have to worry about cancer ever again. Oh to go back in time when I believed it would be that easy.  After my surgery revealed a stage 3 tumor in my chest wall and cancer in 11/12 lymph nodes, I had to now think about how I was going to tell my girls.  Hadn’t I just swore to them this was a piece of cake we would never have to worry about again? It wasn’t easy.  All three of them cried.  But Emma was the one who got angry.  She yelled at me for promising it was nothing to worry about.  How it wasn’t fair, and why did this have to happen to me?  I had no answers for her.  I was asking myself the same things.

Once radiation was over, and my hair started growing back, Emma saw that I was still me and her fears subsided.  Then November 18, 2011 came.  It was the one year anniversary of my mastectomy but it was also the day my sister was brutally murdered by her husband of 20 years. Poor Emma’s 10th birthday party was the next day and she was so excited about it. I remember calling my mother in law to come stay with the girls and then calling a close friend to sit with them until their grand mother could get there.  It was all so surreal.  My brain couldn’t wrap itself around the fact that my only sibling was dead. I too quickly had to say goodbye to my own girls so I could break the news to my parents, and then drive to NJ to tell my nephews they would never be going home again.

Emma seemed ok throughout it all.  My nephews moved in and everyone tried to make the best out of a hellish situation. Unfortunately our nightmare was just beginning.  My younger nephew was always difficult.  He had a very short, violent temper, and he began early on to torture Emma.  He would tell her he would duct tape her to a chair and stab her.  He threatened to kill her several times, and then say he was only playing around.  He began to have many other issues and for two years, I went from counselor to counselor trying to get help and a diagnosis.  I knew he wasn’t right. When he finally had a breakdown and admitted to hearing voices, he was sent to an inpatient clinic for a week who said he could no longer be around young girls and needed to get serious counseling and medication. A week later he was living with his Aunt and Uncle on his father’s side in Virginia.  Our biggest fear was that he would rape and kill Emma as this is what the head of Psychiatry at the clinic told us he thought about.  He was supposed to be on certain medicines and receive full day counseling but his Aunt and Uncle did not follow through with the doctor’s recommendations and to this day, he has not received any of the counseling he was supposed to have.

Emma started to become fearful and anxious over things that never bothered her before.  She could no longer sleep alone, or shower without her sister in the bathroom.  She began panicking about going to school.  She wasn’t eating and never felt good anymore. As the months went by, and as we got counseling for her and her Dr prescribed anti anxiety medication for her, she slowly became herself again. In October 2014, I had to go on another infusion chemotherapy and I lost my hair for the second time.  This scared Emma more than I thought it would.  I mean, she knew I was constantly on one chemo or targeted therapy or another for the past 4 years so what was different now?  I finally realized that losing my hair was scary to her.  As long as I looked like me, even if I was still going through treatment, she could think I was ok and the cancer was going away. Emma was diagnosed with PTSD and severe anxiety. The PTSD was from my sisters murder and the anxiety is from my cancer. It will always be something she will have to live with.  Eventually, she will be able to control her anxiety, but for now it is a battle we deal with every few months.  Today wasn’t a good day.  When I had to go in the hospital for the staph infection, she went into full panic mode again and didn’t want to go to school.  She was given Xanax to help her over the immediate panic feelings and went back to her counselor. She hates feeling anxious and afraid. She just wants to be normal (her words) and not feel so scared all the time. So this morning was not very pleasant trying to get her to go to school. I was screamed at that she hates me several times, and told I don’t care.  It was the typical morning when Emma’s anxiety is bothering her.

As her mom, it kills me to watch her go through this and not be able to help make it go away.  I can’t put on a band aid and kiss it better.  I feel helpless and I am wracked with guilt. After all, my cancer is to blame for her fear of losing me.  And my decision to take the boys in after Kim died caused her to be mentally abused by her cousin.  I have spent months and years going through what if scenarios. The bottom line is that there was nothing I could have done to prevent or change what has happened. I don’t want my 14 year old to have to deal with anxiety issues at such a young age. I want her to be having fun in school, acting boy crazy, and laughing with friends.  I hate Cancer for not only taking my life, but also hers. I hate my ex brother in law for causing such a nightmare of things that all stem from his selfish crime. I want my life back.  I want it to be normal again.  But it never will be normal again. This is the new normal and we all need to learn how to live in it.

Cancer doesn’t just happen to the person who gets it.  It happens to that person’s whole family, their friends, and even their co-workers.  Mental illness is the same way.  It may seem easier to just pretend it doesn’t exist, but that doesn’t make it go away and it won’t make it better. Please don’t ignore the signs of mental illness in yourself or in your family. Ask your Dr if what you are thinking and feeling is normal for you. Ask another Dr if the first one doesn’t take you seriously.  Keep searching and asking until you get the help you need. You aren’t alone and you don’t have to prove you’re super person in order to prove a point.

I hope that by sharing this personal story with you, it will help others going through a similar issue to keep the lines of communication open. It isn’t embarrassing or weird to have a mental illness. It only becomes so when one refuses to get help and ignores the signs. I wish you all peace.

Barb

The Road to Recovery

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Some of you may know that for the last few months I had been dealing with some medical issues.  The silicone implant I got when my reconstruction surgery was done 5 years ago, ruptured and was causing me pain.  I had it removed in December, but then I was lucky enough to get a staph infection which left me in the hospital for a week.   It hasn’t been a very nice start to 2016, but I am finally drain free, and IV through my port free!  It feels great to be able to sleep on both sides, shower normally, and wear my normal clothes.

I am also excited to get back to posting everyday.  Currently I am reading The Pillars of the Earth by Ken Follett.  It’s a big book at 973 pages and I am only on page 304.  I am enjoying the story line, but it is wordy at times which annoys me.  I want to scream “Get to the point!” when reading those areas.  It also doesn’t help that because I still have to be on pain medicine, I get sleepy, and reading those small words tends to relax me after 10-15 pages.

I have many books on my ‘To Read’ list that excite me.  I love the feeling of having so many options of new adventures, new characters to meet, and new topics to think about. I feel that is the best part of being a true book lover. The anticipation as you hold your next book. The questions that swirl through your head such as ‘Will I like this book, Will I grow to love this main character?, Will this be a journey I will always remember?’ All of these things and more make reading such a fantastic way to relax, unwind and unplug from today’s world with all its problems.  In a good book, you can escape to a better time, or immerse yourself in an adventure you wouldn’t have the courage for here in reality.   I love the escapism reading gives me.  While I am in the story world I don’t have cancer, I am not in pain, and all my fears go away.  That is the best part of reading.

I have learned to be patient with my recovery process.  The Dr. told me it would take 6-8 weeks to feel myself again, and another 6 months for my skin to look and feel good over my chest wall. I have had three major procedures to the area and it is going to take some time for my body to heal, especially with my weakened immune system.  Reading this long, chewy, book is helping me recover and teaching me patience at the same time.  I hope you are all reading something for yourself.  Not anything work related.  Something for pure enjoyment.  Let me know what you’re reading in the comment section.  I am always looking for new titles!

Barb

Clumsy Me

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I fell this afternoon. I was taking out the garbage and when I stepped down from the garage door I rolled my left ankle and went down onto my right knee. I was scared I had broken my ankle and being alone what would I do? Thankfully I was able to put weight on it. My back twisted so that’s sore and my right leg hurts when I move my knee all along the outside of my calf.

I haven’t fallen in years. I felt stupid, and glad no one saw me. But I was also scared. Was my imbalance caused by a new tumor in my brain, or just me being clumsy? What if I really had broken a bone? Having cancer, you worry about every single pain, bump, or ache. Falling and breaking a bone is a possibility of bone cancer because it makes the bones fragile. What if I fell on my bad arm? I can’t even imagine the pain and damage that would cause. What if I wasn’t able to get up? How long would I lie there before someone found me?

My hubby says if I don’t feel better tomorrow, he is taking me to the orthopedic. My surgery is Monday and I really don’t need any more to worry about.

I am now pretty much confined to sitting on my flat ass, writing, reading a really good book that I will soon be reviewing, and watching hallmark Christmas movies. What a life!

Enjoy your Friday and be careful not to fall.

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.

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