Tag Archives: breastcancer

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

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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

Pushing Through A Tough Week

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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

 

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

 

 

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

Guarded Thoughts

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When I started this blog I wanted two things from it.  I wanted it to be a place where others fighting cancer, or those caring for a loved one with cancer could come to learn, share, and find a common voice in this scary, crazy world that is cancer.  I also needed it to be a place where I could express myself.  A journal, where I could let go and write about my fears, worries, feelings, and experiences.  To somehow make sense on what has been thrown at me and my family for the past 5 years.

I think I am doing ok with the first part, but I find myself being very guarded with the second.  I have had a lot of shit happen to me the past 5 years.  More than most experience in their lifetime.  There is so much that I have not mentioned yet, and thoughts I have not shared or confronted even.  I think I didn’t want to bother people with my depressing mindset at times.  I worried that if I truly wrote what I was going through that day, or what thoughts kept me up the night before, it would make me seem as if I was looking for sympathy and that is the last thing I want.

I just need to get these thoughts that have plagued me for so long out.  Writing is cathartic for me.  It has always been my safety net.  As a teen, I would write about the struggles I was having with my mother, or about the boy I had a crush on. Mentally it calmed me down, and helped me make sense at what was scaring me or upsetting me at the time. My journal was the best listener, and growing up I felt like I wasn’t listened to much. Even now I feel as if no one really listens to me.  I try to share my fears of dying, or what will happen if my cancer progresses again, and all I get is the positive pep talk of how strong I am and how I could live another 20 years.  That’s all well and good, but sometimes I just want my fears to be heard you know?

This is what I haven’t been accomplishing with my blog.  I think I became so concerned about writing for readers rather than writing for myself.  And maybe that is what you are supposed to do with a blog; write for your readers.  Maybe this is how you get followers and become popular.  The problem is, I was never in the popular crowd, and I want to write for me.  I’m the only one who matters.  I don’t need approval or praise for what I write. I write because it lets me release the voices that are screaming in my head. I write because if I don’t I will explode, or suffocate, depending on the day.

I’m angry a lot lately.  I’m angry that I have to go through this, and feel like this everyday.  I’m angry that my brother-in-law woke up one morning and decided to strangle and beat the life out of my sister.  I’m angry that because of what he did, my family is now fucked up.  Two of my three girls suffer from anxiety, one so badly it becomes debilitating.  The stress of Kim’s murder, having my two nephews live with us, my younger nephew having to move to another relative because he is mentally ill and threatened to kill my youngest, and my marriage almost ending because of him, have all caused recurrences of my cancer.  I can pin point each recurrence to an event. I think as time goes by and the effects of what he did continue to poison our lives, the angrier I get.

This is just the tip of the ice burg when it comes to what I deal with everyday.  I long for a normal, boring, happy life.  Does that even exist?  I know we all have problems, and I know there are people with bigger problems than mine, but is it too much to ask to just get a break?  Can we just have a few years where something bad doesn’t happen? I hate when people tell me “It could get worse”.  I run from that phrase because every time I or someone else says it, I swear something worse happens.  No joke.

I’m tired.  Tired of being sick, tired of worrying if my girls will be alright, tired of being in pain every day, tired of being tired. If reincarnation exists, I must have been a douche bag in my previous life.  I hope somehow, I can have some memory of this life when I move on to the next, because it has to be so much better than this. I know I am blessed on many levels, and I don’t take those blessings for granted at all.  It would just be lovely to have smaller problems, like needing a route canal instead of what I have on my plate.  Whatever it is that lies in my future, I will continue to hope and pray that it will be better than what has been in the past.

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

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

Rolling With the Punches

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The battle against my staph infection rages on.  This morning at 8am I was wheeled into surgery once again to remove another abscess and remove every last bit of infection remaining in the pocket.  This time I have stitches, not just glue, but I have another drain to deal with.

Drains are the bane of my existence.  When I had my original mastectomy, I had a latissimus dorsi flap reconstruction.  They removed a large piece of muscle from my back and used it to support the side of the implant. I had 3 drains that time. One was on my left breast which was healthy but made smaller and lifted.  That was out in 2 days.  Then I had one for the right breast which was now just a saline spacer.  This was removed in 8 days.  The one in my back was the stinker.  I made a new record because that sucker was in for 11 weeks!  Not days, mind you, WEEKS. Talk about a nightmare.  In July of 2011, the silicone implant was inserted and again I had another drain.  This was only or 5 days or so.

I never had any infections or problems with any of them. Now I get the ruptured implant removed on 12/21/15, deal with another drain, have that removed on 12/31/15 and the bright shiny new year starts with a high fever, aches and pains, and my chest well red and hot.  So here I sit in my hospital bed, in my private room which is very nice, hooked up to another drain.  It feels like a class reunion in a weird way.  Please send up a prayer, a positive thought, healing white light,  or light and love that things go smoothly from now on.  No more infection, fevers, and when this drain is removed that there will be no infection or seromas, and I can move on.

Life throws a lot of punches at you.  It is constantly trying to beat you down. Our job is to fight back.  It’s how we learn, adapt, and become stronger.  The people who fight back the hardest are the strongest.  Those who barely try to fight, become slow, dull, and sickly. The ones who do nothing, die

Learn to roll with the punches.  Don’t be an Oak that never bends, but stands firm;  be the Willow.  It bends and sways and gracefully accepts what life throws its way.  Flexibility is the key to balance and happiness.  Embrace it.

Thanks-

Barb