Tag Archives: pain

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

 

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

Sunday Morning, 3:15 am

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Can’t sleep.  Yesterday was a really tough pain day from the tumor in my collarbone and neck.  The pain pills refused to provide any relief, until near bed time.  Then I don’t sleep soundly because each time I move I’m waiting for the surge of pain but then relish that it isn’t there!

My cousins’my aunt, and two of their kids came out to visit for a couple hours yesterday afternoon.  It is always great to spend time with family you have a history with.  They are twins, 2 years older, and have been the biggest influence in my life.  Every funny, happy memory I have growing up, revolves around that family.  Cancer has not escaped them either.  Their dad, my uncle, and my mom’s older brother, died from melanoma and prostate cancer in 2006.  He fought 9 hard years and if he had just went to a dr earlier for both, he would still be alive today, especially with all the new advances.  He was only 63.  Six weeks after I was diagnosed, in 2010, My cousin Meg was also diagnosed with stage 1-2 invasive ductal carcinoma.  She went to Sloan Kettering, and only had to have a lumpectomy with a sentinal node removed.  There was no lymph node involvement, and she has been cancer free since 2011, after going through chemo and radiation, as precautions.

It isn’t easy hearing of family and friends who get this disease.  My heart breaks for them knowing what they will go through.  It is also hard for me when their cancer is no where serious as mine, or seeing the treatments that I have tried work brilliantly for them, but do nothing for me.  I am only human I guess, and though I really try not to ask why?, I admit that lately it has gotten harder to not ask that.

This week we lost a country music singer named Joey Feek to ovarian cancer.  Joey would be best known from her and her husbands Overstock commercials.  He always had on overalls and was playing the guitar, singing to her.  She was beautiful. with long brown hair, and a voice that blended with her love’s seemlessly.  Joey was diagnosed 2 years ago, shortly after the birth of her youngest girl, who was born with Down’s Syndrome.  She made it her goal to fight her stage 4 cancer so she could see her youngest turn 2.  She reached that goal recently, and made the brave choice to end treatment and go in peace.  She passed away 3 nights ago with her husband Rory by her side.

I was shocked to even hear she was sick on Monday.  I had not seen or heard of it on the news or social media, until the end.  I had just been seeing their commercials again on TV which brought her name to mind when I saw a clip on Yahoo!  She was only 40, and I believe she has 4 young children.  It upset me a lot because of what I am going through, and because I looked at this another wasted death from a cancer we should know more about.  Ovarian cancer is one of the least known about cancers in women’s health.  There are no symptoms for early detection.  The best you can hope for is to have a family history which would allow you to be screened, have breast or colon cancer and get screened for the braca 1&2 gene, or pay for a private screening on your own.  By the time the disease is detected, it is in the advance stages, and rarely able to go into remission.  Available therapies are not effective and while they may provide some time, the quality of life is not there.  There is so much wasted beauracracy and money in big pharma and this government.  Possible treatments, and even cures wait years to get to a dying public, and sometimes I think they deliberately are withholding the cures so they can make more money on the treatments.  Let’s face it, in this country, the unhealthy make them billions, and if that were to end, where would the big cushy salaries come from?

Don’t mind me, I’m just a terminally ill cancer patient, who has more onmy mind than sleep and I’m a bit cranky waiting for the next dose of pain killers to kick in.

Thanks for following, for your constant support, and if you have any questions, or comments, please share them with me.  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

 

 

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!

 

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