Tag Archives: side effects

Health Update

Standard

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

Standard

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

Standard

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!

Standard

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!

Standard

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

New Hurtles to Jump Through

Standard

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!

 

Books I Read for Comfort

Standard

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!

Insomnia Ramblings

Standard

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

Clumsy Me

Standard

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

Overcome With Fatigue

Standard

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