Some days the pain wins

Days like today I feel less than myself. I get upset that I have to deal with so much pain, on such a regular basis. It’s 7:30 pm and I’m falling asleep on the couch from pain and exhaustion while my kids and boyfriend eat dinner and watch a movie. I miss out on family moments because the pain steals me away. I know they understand and are used to it but that doesn’t make it any better.

I’m only 30. If I’m this exhausted now how tired will I be at 40 or 52. I don’t want to have this pain. I don’t want to have the responsibility of this disability. I know it’s the pain talking but sometimes it’s too loud to stop it.

1 in 8

Today I made a big decision. I had genetic testing done to look for cervical and breast cancer genes. Do you remember several years ago when Angelina Jolie had that testing done and then had a double mastectomy as a preemptive measure? Well it’s that test. I am also being scheduled to have my first mammogram. However lets rewind a bit….

I just moved from Florida to Atlanta last year, so I am in the process of getting all new doctors. I also FINALLY have healthcare which is a feat within itself in this country. In the past three weeks, I have developed a sharp, burning pain in my right breast. It comes and goes but it is consistent once it starts. The first week it was annoying, the second week it was tiring, the third week I have started to worry. My grandmother had breast cancer when she was 28. She did survive it and then went on to die from a different type of rare cancer later on in life.

It is reported that, 5% to 10% of breast cancers are hereditary. There has been advancements in technology that allows scientists to look at our genes and detect if there are any abnormalities that could end up being cancer. Most inherited cases of breast cancer are associated with mutations in two genes: BRCA1 (BReast CAncer gene one) and BRCA2 (BReast CAncer gene two).

You are more likely to have a genetic abnormality linked to breast cancer if:

  • You have blood relatives (grandmothers, mother, sisters, aunts) on either your mother’s or father’s side of the family who had breast cancer diagnosed before age 50.
  • There is both breast and ovarian cancer on the same side of the family or in a single individual.
  • You have a relative(s) with triple-negative breast cancer.
  • There are other cancers in your family in addition to breast, such as prostate, melanoma, pancreatic, stomach, uterine, thyroid, colon, and/or sarcoma.
  • Women in your family have had cancer in both breasts.
  • You are of Ashkenazi Jewish (Eastern European) heritage.
  • You are African American and have been diagnosed with breast cancer at age 35 or younger.
  • A man in your family has had breast cancer.
  • There is a known abnormal breast cancer gene in your family.

If one family member has a genetic mutation linked to breast cancer, it does not mean that all family members will have it. So just because your sister or mom tests positive does not mean that you will test positive as well.

The average woman in the United States has about a 1 in 8, or about 12%, risk of developing breast cancer in her lifetime. 

Women who have a BRCA1 mutation or BRCA2 mutation (or both) can have up to a 72% risk of being diagnosed with breast cancer during their lifetimes

I made the decision to have the testing done. I am one of those people that would rather know answers so I can thoroughly research my options. I am not scared of the results. It is just another piece of a puzzle and one less “What if” in my life. I also will be going in for a mammogram hopefully in the next week. My doctor sent in a referral for me to have one. We have a double purpose for this, one to check on the pain in my breast and two because I should have started getting them at 18 and need a baseline mammogram.

My super fancy and VERY PINK doctors office

If you have a 1st degree family member with a history of breast cancer below the age of 50, you should be getting a mammogram ten years prior to when your relative developed breast cancer. So I know that sounds a tad confusing, but as an example if your mother had breast cancer at 37, you would start getting mammograms at 27. One thing my doctor said today that really stood out to me was this:

“Don’t ever let anyone tell you that you are too young to get breast cancer”

All in all my appointment today went well. I will post an update when I go to get my mammogram. I am in limbo with the genetic testing waiting for results for 2-3 weeks. I also had a pap smear done to round out my annual physical. I’ll have those results soon as well. In the meantime i’ll be preserving my spoons for other adventures.

They gave me a super comfy robe to wear instead of a paper dress!

Boob. Breast. Tit.

So while I am dealing with this daily pain, a new pain has arisen out of nowhere. I started having sharp, severe pain in one location consistently in my right breast. I have of course done the thing that no one should do and have googled the hell out of it. The first thing that always jumps out is cancer, but really what did I expect from the internet.

Some other legitimate options are a cyst, a clogged duct, or a pulled muscle (but I don’t feel this one is likely based on the type of pain). I have actually learned a good deal about the endless searching I have done recently. First of all there are two types of breast pain, cyclic and noncyclic.

Cyclic breast painNoncyclic breast pain
Clearly related to the menstrual cycleUnrelated to the menstrual cycle
Described as dull, heavy or achingDescribed as tight, burning or sore
Often accompanied by breast swelling or lumpinessConstant or intermittent
Usually affects both breasts, particularly the upper, outer portions, and can radiate to the underarmUsually affects one breast, in a localized area, but may spread more diffusely across the breast
Intensifies during the two weeks leading up to the start of your period, then eases up afterwardMost likely to affect women after menopause
More likely to affect women in their 20s and 30s before menopause as well as women in their 40s who are transitioning to menopause 

Breast pain is a very common symptom for many things but when it is time to be concerned is when it lasts for more than a couple weeks, it is in one particular section of your breast, seems to be getting worse instead of improving, starts to interfere with your daily activities.

For me, I am experiencing all of the above. Now to top it off I have to add on the fear that my grandmother had breast cancer at the age of 28, and believe it or not certain genes can be passed through family members that cause breast cancer when those genes become mutated. My mom has had mammograms since she was in her 30’s, as have my sisters. Naturally I have quite a bit of concern with my centralized pain. It feels like someone is poking me with a burning, sharp poker whenever I touch or accidentally hit my breast. Over the past weeks I have poked and prodded them in a almost excessive attempt to find a lump. Thankfully I have not found anything yet.

I have an appointment tomorrow afternoon to meet with a GYN and figure out what the heck is going on. It’s just really one more pain that I don’t need right now. I will definitely keep everyone abreast of the situation.

Curves in all the wrong places

I am a spoonie. I know you are probably thinking, “What the heck is a spoonie?” and before we go any further I will assure you I do not have some strange obsession with spoons. A spoonie is someone who has a chronic illness or disability, they measure their daily tasks in spoons. You are allotted a certain amount each day and each task you accomplish takes away a certain amount. Essentially like a battery being drained of energy. This theory was the brain child of Christine Miserandino, and frankly it is totally on point.

I have S curve scoliosis. I know when you hear scoliosis you think, oh my friends sister had that and she is just fine. Well I am very happy for her but mine is a severe case. It affects my every movement. I am in pain every moment of everyday, from a minimal amount to hysterical tear inducing pain. It affects my breathing, my ribs, my ability to walk or be mobile, my hips, my back, my neck, it causes headaches (daily), numbness and tingling in my hands and feet, nerve pain in my legs and arms, knee and joint pain, and severe exhaustion. My PCP has preemptively diagnosed me with fibromyalgia and I am soon going to be tested for dystonia.

My last x-ray in 2016

I am 30 years old. I have been in and out of doctors offices since I was born. I was born with 2 VSD’s, these are holes in my heart. I saw a cardiologist until I was 18 and they were assured I was okay. I started having severe migraines at the age of 7 and had my first MRI then as well. They found my scoliosis at age 10. I was diagnosed bi polar depressive at age 27.

I have tried everything so far short of major spinal surgery for my scoliosis with no relief and it has only gotten worse. I have tried bracing, physical therapy, massage, and seeing a chiropractor. Medications don’t touch my pain, I still take them with hopefulness but they just don’t work. Heating pads, rest, not being active, pain relief creams, etc help to mask the pain for a bit but it is a never ending battle.

I am starting to actively search for a plan for the rest of my life in reference to my spine, my body, my pain. I have a neurology appointment in December and new scans coming up soon. I want help, I am tried of the daily pain I have been fighting for most of my life. So that brings us to the reason for this blog and me sharing all of the above with you. I deal with this everyday and have for almost 20 years, if even one thing I say can help someone or allow someone to realize they are not alone then I will be happy. I plan to share my life on here, the good, the bad, the pain, the doctors, the experience of being a spoonie.