Cancer Sucks

Lately it seems every time I check in with my various support groups 2013 isn’t a very good year for the ladies dx with Stage IV.  With every day comes the dreaded post that someone has moved on, some have been dx before me and some after and a lot of them are leaving behind young kids while others had a longer more full filled life.  

What many people don’t realize is that fighting to live comes at a high financial cost which in turns puts more stress on an individual and family.  If you have noticed recently I post a link of a fellow Metster who is still valiantly fighting but has also entered into to palliative care (aka Hospice) she has 4 kids.  Reading her blog    http://hehashealed.me/2013/04/28/sickness-vs-selfishness/ it reminded me of my mom’s battle and the way family and friends rally around that was 7 years ago.  It is important for a community to lend a hand to a neighbor fighting any kind of disease or just down on luck.  Many may say they are fine not wanting to feel like a charity case, or extend a hand but sometimes mowing a lawn, having dinner delivered or a note will go a long way.

Today we have tools such as the internet, facebook and forum’s that allows woman across the world to connect and find out different treatments.  It also a bit of a relief to be able to talk to those who understand exactly what each other is going thru.  

It is sad reading online how families are losing their homes simply because the cost of medicine and hospital bills sucks families’ dry, depleting retirement and savings.   I just read of a post of a fellow metster who just got severed foreclosure on their home of 20 years, it is not fare.  The fact that the same medicine is more than half the price outside the United States, all because Corporations are more concerned about their bank account, boats and multiple homes.  Even doctors are closing practices and going overseas http://money.cnn.com/2013/04/25/smallbusiness/doctor-quit-healthcare/index.html

Cancer, Sjogren's, Raynauds, Fibromyalgia Oh My....

Stage IV Breast Cancer Triple Negative, Brac 1+, Sjogren ’s syndrome, Raynaud's phenomenon and now fibromyalgia all attacking my body.  With each one come’s more medications and changes in food intake and habits to adjust the pains and limitation each one brings. 

As a child I remember looking forward to the county fair and the one game I always seemed to win at it was a big roulette board with a bunch of holes and a little mouse, you place your coins on a color the sketchy looking dude would spin the wheel and then let the mouse out.  To this day I still have the matching bears I won one for me and one for Carrie, that is when the prizes where actually high quality unlike today.   That game reminds of my life today everyday is like spinning a roulette wheel you have no idea what if any flares you will have.

Flares I can hear…Huh?  Flares are a term used for the auto immune disorder I am fighting that decided to attack any number of systems or body parts.  The glands in my mouth are a constant giving and what makes things crazy is water makes my mouth feel like cotton, while soda doesn’t…crazy huh.  Now it seems even more things are been attacked and more often, it has been almost a week waking up to my hands in a position some of my cousins will remember as a child when I was about to scratch the shit out of them cause they pissed me off….So basically it looks like I am about to claw someone and when I stretch them they hurt like hell and feel swollen most of the time it is between 3 am and 5 am.  It is not the only thing hurting; I crawl out of bed in the dark lighted by the TV in the Den, find my pain meds, take em and crawl back in bed.  If I was on my back, I have to flip to my stomach, in an attempt to distribute the pain.  I was put back on one drug that has allowed me to actually go to sleep at a normal hour, and another one to control fibromyalgia.  I have been fighting extreme fatigue since Christmas which is partly due to Sjogren’s but apparently I have fibromyalgia too….huh you ask again well……..

“Fatigue with fibromyalgia is described as crippling, exhausting, and flu-like. You may experience fatigue on arising, even after hours of bed rest. And many people with fibromyalgia have disturbances in deep-level or restful sleep, so the fatigue they feel is not easy to treat.” http://www.webmd.com/fibromyalgia/default.htm

For those that don’t know here is a recap of Sjogren’s: What is Sjögren's syndrome?

“Sjögren's syndrome is an inflammatory disease that can affect many different parts of the body, but most often affects the tear and saliva glands. Patients with this condition may notice irritation, a gritty feeling, or painful burning in the eyes. Dry mouth (or difficulty eating dry foods) and swelling of the glands around the face and neck are also common. Some patients experience dryness in the nasal passages, throat, vagina and skin. Swallowing difficulty and symptoms of acid reflux are also common.
“Primary” Sjögren's syndrome occurs in people with no other rheumatologic disease. “Secondary” Sjögren's occurs in people who have another rheumatologic disease, most often systemic lupus erythematosus and rheumatoid arthritis.

Most of the complications of Sjögren's syndrome occur because of decreased tears and saliva. Patients with dry eyes are at increased risk for infections around the eye and may have damage to the cornea. Dry mouth may cause an increase in dental decay, gingivitis (gum inflammation), and oral yeast infections (thrush) that may cause pain and burning. Some patients have episodes of painful swelling in the saliva glands around the face.

Complications in other parts of the body can occur. Pain and stiffness in the joints with mild swelling may occur in some patients, even in those without rheumatoid arthritis or lupus. Rashes on the arms and legs related to inflammation in small blood vessels (vasculitis) and inflammation in the lungs, liver, and kidney may occur rarely and be difficult to diagnose. Numbness, tingling, and weakness also have been described in some patients.” http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Sj%C3%B6gren_s_Syndrome/

Like many in the same boat denial is bliss but there comes a point when you realize you’re not super human and your body can’t handle what it could do previously.   Not only do I have to battle fatigue from Cancer Treatment/10 surgeries in 2 year period/Sjogren’s Syndrome/Fibromyalgia, but I also have to deal with the lasting effects of Chemo on the Brain aka Chemo Brain, then there is Fibro Fog and the interaction of some of my meds which can cause some forgetfulness, you think you have done something and come to find out u didn’t.  From http://chronicfatigue.about.com/od/symptoms/a/brainfog.htm

Brain Fog Symptoms Fibromyalgia

Symptoms of brain fog can range from mild to severe. They frequently vary from day to day, and not everyone has all of them. Symptoms include:

• Word use & recall: Difficulty recalling known words, use of incorrect words, slow recall of names.
• Short-term memory problems: Forgetfulness, inability to remember what's read or heard.
• Directional disorientation: Not recognizing familiar surroundings, easily becoming lost, and having trouble recalling where things are.
• Multitasking difficulties: Inability to pay attention to more than one thing, forgetfulness of original task when distracted.
• Confusion & trouble concentrating Trouble processing information easily distracted.
• Math/number difficulties: Difficulty performing simple math, remembering sequences, transposing numbers, trouble remembering numbers.

Chemo Brain

“Post-chemotherapy cognitive impairment (PCCI) (also known as chemotherapy-induced cognitive dysfunction, chemo brain, or chemo fog) describes the cognitive impairment that can result from chemotherapy treatment. Approximately 20–30% of people who undergo chemotherapy experience some level of post-chemotherapy cognitive impairment. The phenomenon first came to light because of the large number of breast cancer survivors who complained of changes in memory, fluency, and other cognitive abilities that impeded their ability to function as they had pre-chemotherapy.” http://en.wikipedia.org/wiki/Post-chemotherapy_cognitive_impairment 

It is t-minus 3 weeks till that dreaded 3 month scan and the pain and fatigue has only increased even with several days off work..ugh

Time Flies

Sometimes denial is bliss when your reality is a daily fight to make it not only to the next day but to the next birthday. But sometimes your brain likes thinks you can do more than your body can take. We will see if two more specialist and a long weekend will allow the body to recover. Looking back at the beginning for the mind working during Chemo but not so much for the body, the 2nd time around with chemo I took the day off, but I probably should have taken more, oh well, no time to dwell on the past. Hoping to clear up the brain fog, sleeping issue, digestive issue, and battling Scananxiety which seems to start earlier the longer I go NED (for non cancer peps it means No Evidence of Disease). Not a bad run I must say considering that in the beginning I wasn't expected to make it 6 months yet here I am 4 years later, while those I have meet on the journey many dx after me have passed on. As the months pass the medical bills stack higher and the monthly prescriptions climb with each visit to the hill. Luckily Summer is right around the corner.

My Life

MY LIFE

Triple Negative Breast Cancer

BRAC 1+

Stage IV

Chemo 1

Chemo 2

Surgery X 6

Radiation

Chemo 3

Sjogren’s Syndrome

Fibromyalgia

Raynaud's disease

Meds-8 a day

Flares

More Meds-12 a day

Bills

$300+ in Meds a month

NO ENERGY

NO MONEY

MORE TESTS

Pesky Gland

Still dealing with a swollen partoid gland and swelling in the lymph nodes in my neck.  We are know on round 3 of antiboitics, if this doesn't work I get a CT Scan of the neck and glands.  The pesky glands are interfering with my breathing and sleeping.

My referral has final been sent over to the sleep study peeps, say the work hereditary and having Oncology call means u get in sooner.  It looks like it will be mid April for this dr. appointment.  My ONC basically told me I had to sleep 8 hours, yeah kinda hard when even the oxy your popping like candy.  She looked at my meds again and noticed that I am no longer taking muscle relaxer and then both of realized alot of my issues started after stopping it.  So I am back on muscle relaxer to see if that will assist with the pain and sleeping. 

Pain is quite the word for it, seriously it even hurts more after sleeping the required 8 hours. I am also suppose to start gargling a mixture of water and baking soda to help with the throat issues.

Walking Pneumonia or Lung Mets Return?????

Hoping the antibiotics work one more day, seriously do not want to have to deal with walking pneumonia again or worse damn lung mets. Finally gave in and emailed my ONC to determine if I can wait to see if the antibiotics work or If I get to have get another chest x-ray.

Welcome to my world is it a Sjogren's Flare or is it Metastatic Cancer going once going twice, who the hell knows I am just tired of being tired and damn it I ate all the marsh-mellows, I need another box of lucky charms.

Exhaustation

Not sure if exhausted is quite the word for it and I really didn’t do anything went to work, did a couple loads of laundry, put some hurdles up and then came home.   It wasn’t till I went out to pick up some sesame oil that it hit me spent 2 hours shopping and now back at home.  The ringer on the phone has been cut off, getting food in my tummy and then a little medical research.  I have a feeling I will not be waking up till after noon tomorrow.   I have an appointment on Monday with the ENT so he can take a look at my lovely swollen parotid gland we are going on about 8 months of this thing being swollen.  It gets bigger than goes back down but is constantly swollen, massaging and heat pads due nothing, heat actually makes it worse.  I actually found another online support group of women who have sjogren’s and came across a natural remedy which is why I was out getting sesame oil to hopefully help with this swollen parotid gland.  Also waiting on an apt with the sleep study department at UNC, since Sleep Apnea seems to also run in the family apparently my Dad has it bad and my sister is waiting on her final results.   I am thinking this may be contributing to the fatigue already being caused by the Sjogren’s.

A long soak in Espsom Salt will also be on the agenda tomorrow, as well as oil pulling (http://oilpulling.com/oilpullingmethod.htm) and plain rest.   It is nice to know that there are others that are facing some of the same issues that I am but I still haven’t found anyone that has both Sjogren’s and Stage IV cancer.   The Vitamin D and Fish oil seem to increase the energy by about an hour but it comes with a cost the crash afterwards.  This results in frustration and irritation.  Luckily spring break is this week which means a shorter schedule and plenty of time to get ready for the Relays without overdoing anything.