Chronically Yours

It's weird the way life works out. This month I'll turn 34 years old, and needless to say this isn't at all how I thought my life would look on my 34th birthday. I'm not complaining, it's just strange. We all make these plans for ourselves; I'll go to this college, then get this job, then move here, get married have babies and live happily ever after. What I couldn't plan was getting diagnosed with a terminal illness, or any serious illness. How could I have planned for it? You don't anticipate getting sick, you don't see it coming, there aren't exactly warning signs leading up to a breast cancer diagnosis. It just happens, quite literally out of nowhere. And then from that moment on, your life is changed. Time keeps moving forward and you can't go back, you are forever changed. The thing is though you aren't prepared to be forever changed. My life turned on it's head, just completely upside down. For a long time I thought of it as temporary, that whole first year after my initial Stage II diagnosis I thought of it as something that happened. Not something that was happening. Now it's just always happening, it's an always and forever thing here. Better or for worse. I may be a single woman in her 30s but my forever companion will now be cancer. Always checking on it, always making sure it's behaving itself, and if it isn't well then I have to find a different way to deal with it. There is no break up or divorce that can happen here. Chronic illness is just that, chronic. 

The most common question I get is "When will you be done with treatment?" and it's a simple answer: Never. 

My breast cancer went from a temporary problem to a permanent one, and I've spent the better part of this last year trying to wrap my brain around that. My sister, Sarah has been dealing with her own chronic illness for upwards of 10 years. And I'll be honest, I didn't always understand it. I didn't understand why the doctors didn't have an answer, or why she kept going from doctor to doctor, searching for an answer. I didn't understand it, until I was in it. The merry go round that is our health care system is INSANE. I have heard SO MANY stories about women who's pain was ignored by their doctors or dismissed by them as nothing. Some of these women ended up with advanced stage cancer, while in my sisters case it's advanced stage endometriosis.

My sister has suffered endlessly for years, she has been diagnosed with fibromyalgia, chronic fatigue, P.O.T.S, and has been told that she just "feels pain too deeply" or that she is just "sensitive." "Sorry there's nothing we can do" they said. Until the pain got so bad last month that we ended up in the Emergency Room thinking her ovarian cyst had burst. We decided it would be best to do surgery that day to remove her cyst, hoping this would stop the pain cycle. What I didn't anticipate is the surgeon coming out of surgery to show me pictures of my sisters ovaries completely covered in endometriosis cysts. Endometriosis EVERYWHERE. How could this be? How could it have gone this far? Why didn't anyone catch this before she got to Stage IV endometriosis? Why didn't anyone catch this before a hysterectomy was her only option?

Is it the doctors who aren't trained properly? Is it really that hard to catch? Or does the medical community really take women's health issues and pain less seriously? Maybe I've become cynical at this point but I'm going with the latter on that. From my experience, which is limited to being a woman, I can tell you that I truly believe that women are neglected when it comes to serious health issues. Take one look at the meeting our government had about women's health issues recently, not a woman in the room. I'm not here to get political right now (F*ck Trump though, no really F*ck that orange guy), but really WHAT GIVES?!?!?

WOMEN GIVE BIRTH- they push something the size of a watermelon out of something the size of a lemon! Why on God's green earth would anyone ASSume a woman would have a low tolerance for pain????

Because it's a convenient way to brush off a woman in a doctor's office? Probably. And God forbid you push a little bit with your doctors and be assertive about your health, most doctors do NOT like that! Did you go to medical school? Nope, but I live in my body and you don't so I'm thinking I have a better idea about it. This CHRONIC problem my sister has had, has been ignored. It has been completely brushed off and ignored. Now she is at a point where her only option is a hysterectomy and that puts her out of work for 6-10 weeks. She already had to take 2 off around her initial surgery, and the pain has gotten so bad she can't work before surgery. I have quickly made the jump from patient to part-time care taker. She has a wonderful man in her life that helps her tremendously, which in turn helps me because I am chronically (I'm trying not to use the world terminal as much-just because statistics say it is doesn't mean I have to keep telling myself it is-I digress) ill and am taking 5 chemo pills a day to keep my disease at bay. I'm working hard with my band-mate and attempting to find more work (yoga/personal cooking/singing tunes) and working hard at trying to keep myself cancer free and be there for others. At the end of every day I am not sure where the time has even gone. Most people understand this because of my diagnosis; cancer. My sister hasn't been so lucky.

My last blog I wrote about how I'd changed, how my relationships had been affected by this change and my worth surrounding all of it. At the end of the day I do have the "cancer card" it may get tired after a while, it may not be an excuse for me acting like a jerk, but I have it. It's something people can connect to and sympathize with, most of us have been affected by cancer in some way. My sister has been dealing with a disease she didn't even know she had that was affecting her entire body for upwards of a decade. Before I was diagnosed I KNEW something was wrong, something wasn't right. My entire body was off, and not long after I got a serious diagnosis. My sister and many others with chronic illnesses go mis-diagnosed or un-diagnosed for years on end. Imagine the effect that has on you? For years you KNOW something is wrong, but no one can find exactly what it is. Your friends start thinking you're a hypochondriac (been called it myself). Your family doesn't know what's wrong. Doctors don't know what's wrong and also think you're a hypochondriac. And then you betray yourself by starting to believe you must be making this all up in your head! I have felt this way and I have the Big C, the women I talk to with chronic illness feel this in spades.

I have said it before and I will scream it now; ADVOCATE FOR YOURSELF!!!!!

No one will do it for you, no one cares about your life as much as you do.

ADVOCATE
FOR
YOURSELF

Don't give up, find an answer. You will save your life, you will reclaim your life, your doctor will not do it for you. They are there to aid us and guide us and give us their highly educated opinion. It is up to us what kind of care we receive. You feel like your doctor neglects you? Get a new one. Western medicine can't find the answer? Go find a Chinese medicine practitioner and see what they say. Think I'm crazy? You're probably right but just go do it anyway (an Integrative Medicine doctor or Osteopath would be great too)!

I'm going to leave the link to my sister's GoFundMe account, if you have any extra change laying around we would be grateful, it will be used to help with surgery expenses. Thank you!

https://www.gofundme.com/4kb8x88

XOXO,

Jenny