Radiation Completed

Standard

Today was my 15th and last treatment of whole brain radiation therapy and am I glad to be done!  It will take another month before I begin to shake the fatigue side effects but at least everyday I can tell myself its a step closer to being back to normal again.

In 8 weeks, I will have another MRI of my brain to see that this worked.  Until then, I put my life in God’s hands because there is nothing else to do.  He has my plan and I believe that it will be a good one.  I want to thank my family, friends, and my social media friends who have lent me so much love and support these past 3 weeks.  I really relied on all the positivity, and giggles, and kind words o get me through each day.  So huge hugs to you all.

Upcoming I have my body scan on Monday to see how far the cancer in my collarbone has gone (hopefully no where).  Then next Wednesday I meet with my oncologist to finalize treatment to get rid of that cancer.  I am hopeful and know that although I will always be fighting, I will get breaks which will give me strength to fight the next battle when it comes.

Life is good.  It really is.  No one said life would be perfect.  Bad things happen to everyone.  It’s how we choose to live our lives that matter.  Are you going to sit and blame others for what is wrong in your life or are you going to have faith that God has a plan for you and all you need to do is believe that you are loved and you will be taken care of? Yes life can be difficult, and unfair, and sad, but it is also filled with blessings, love and richness beyond our belief too.  Embrace each day as it was your last.  Smile at people. Be kind. Believe me, it won’t kill you!  XO

Little Changes

Standard

My radiation is winding down with just 3 more sessions to go.  I’m glad due to the side effects I am having.  Unbalanced, leg weakness, shaking in my left hand, vision changes in my right eye, and fatigue.

To make things easier, I make a point to get ready for the day early, and then pack a tote with what I need and want for the day.  Then I stay on the main level until bed to avoid stairs which with my weak legs are difficult. My mom gave e a cane for walking longer distances in the hospital.  I find I am getting my foot stuck and then feel unsteady.  I am going to use it today.

I feel old, but I am also doing what I have to.

I meet with my oncologist this afternoon to get the results of the biopsy and discuss these side effects, as well as plan the next treatment plan.  I will be letting you all know tomorrow.

It’s Only Hair

Standard

That’s what they say to you when you lose your hair as a side effect of radiation or chemotherapy.  It’s only hair, it will grow back.  Is it?  For me, this is the third time in 5 years I have had to have my head shaved.  The last time was a year ago.  While I no longer shed tears, it is an emotional step in your journey through life with cancer.  Most times it cannot be avoided, and you can choose to show off that gorgeous dome and try a look that most ever get to try; or you can wear hats and scarves for the first time to cover up and feel more covered.  I personally never looked good in any hat until I was bald!

I am tempted to rock the bald look with using strong makeup and cool jewelry choices.  Like possibly a cartilage piercing, or nose piercing?  What do you all think? Is 50 to old to do that? a brow ring? But then, do I want everyone focused on my face and head?  They will see my lack of hair anyway!

Yesterday, when first shaved, the fuzz left on my head was darker so you could see the hair outline.  This morning, I’m much lighter and balder thanks to pillow friction.  Now I am afraid because I don’t know if I have the confidence to do this.  I look like a cue ball.  I do have a great shaped head which I guess is a plus, but it’s still a head that’s naked.

Being bald isn’t just a vanity thing for people with cancer.  It’s another piece of you the disease rips from you.  Like it is screaming out “I get another part of your body!” That is what sucks. It’s just one more thing you deal with every second of everyday.  It’s not like you can forget about being bald.  Your head gets cold,hot, wigs itch, hats and scarves can give you headaches, and then you have the scalp care.

You have to take care of your scalp because during treatment, you will also deal with rashes, acne, and peeling.  Be careful of sunburn and windburn by using a strong SPF and having a hat to cover. Find a good gentle shampoo that will deal with your issues and wash at least 2 times a week.  Moisturize the whole head after pat drying to lock in moisture.

Be careful how you react to people who are bald.  Many are sick and could use a smile that says you have seen them, not just their head, but their soul.  It will make such an impact on that persons day.

Biopsy… And Beyond

Standard

Last Wednesday I had 2 core biopsies taken from my collarbone and although I said I would post the next day, it took me a bit to recover with also going through my WBR.

I was naive enough to think I would be in “twilight” during the procedure.  That’s the nice floaty,  half in, half out state they put you in without the dangers of fully being out.  Alas all I got were several shots of lidocaine in an already sore area.  The tech performed an ultrasound to see the best spot to take the samples from.  I was able to see my small lemon sized tumor (which is a pretty small lemon if you ask me) and they located the vascular lines to prevent me bleeding out I guess!

The radiolgist came in and explained that they would be taking a core sample, sending it quick to see that they got enough material, then take 2-3 more samples if needed.  They got me into a good position so the tumor was exposed, but which began to cramp up my neck.  The first sample was taken by a small tunnel like tool and “fired up” whatever that means to remove it and place on the slide.  I thought “Hey not bad, didn’t feel a thing!”  The dr. called and said they would 2 more.  He began the next sample but this was much different than I expected.  It was in the center of my tumor, right in the muscle and the pressure was so painful.  I kept breathing and they were placing a wet cloth on my forehead, but honestly, there are no words to describe what I was feeling. The sample done, he had to put pressure on it which wasn’t pleasant either.  After what seemed like 10 minutes but was most likely only 5, the phone rang and by some miracle, they got enough material and I was done!  Many prayers of thanksgiving went up to heaven at this point.

Once done, they put a tiny band-aid on you and send you on your way.  I was shocked at how tiny the areas were and how there was no bleeding or swelling to deal with after.  I put ice as recommended on the area a few times, and just continue on the vicodin as usual.  I felt fine the next day.  Other than the increasing fatigue and brain fog that sets in from the radiation, it wasn’t the nicest experience, but not horrible either.  I’m glad its over let’s just say.

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

Sunday Morning, 3:15 am

Standard

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

Standard

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

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!

 

Guarded Thoughts

Standard

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