Doctor's Visit - December 2014 (or Endometriosis: Episode 4, A New Hope)

(Love this sentiment, but have been wondering if this is true lately)

I will end up talking about this with many people in my life, but this also feels totally appropriate for my blog.  I had a visit with my Ob/Gyn doctor (Dr. K) yesterday and made a decision that could lead to some difficult but ultimately positive changes.  Most importantly, I decided I'm ready to try Lupron, the drug that I had resisted trying for so long because of the side effects.  I've written about it before on this blog (so you could search for those posts) but in simple terms: it causes your body to go into menopause.

Happy Mothers Day!!

Happy Mothers Day to all the mothers out there!  Whether you are a mother with endometriosis or a mother to someone with endometriosis, you deserve to be celebrated!  And if you are a mother with no relation to endometriosis at all, well Happy Mothers Day to you too, because we all have our tough times and mothers help us through them.

Thoughts (Breast Cancer and Endometriosis)

I didn't really know what to title this post.  It feels intensely personal.  It's just some thoughts and observations I've been having as I deal with endometriosis and as I also watch my mother deal (bravely) with breast cancer.  It is wonderful how much support and how much of a sense of community they try to give to these women when they are newly diagnosed, as well as throughout the process.  I've been impressed and surprised along the way with how much generosity there is for women with breast cancer.  She has access to a nutritionist, to breast cancer gatherings, even to a garden, I believe.  My mom received a hand-made blanket to have for her chemo treatment.  These blankets are made by hand and donated to the hospitals for chemo patients.  She received a free wig, which I have seen online at a cost of hundreds of dollars.  Since losing your hair is one of the biggest fears for someone going through chemotherapy, I know a wig doesn't alleviate that fear but having someone available and not having to worry about cost are two less things to worry about and that's huge.  There are even small handmade items throughout the process.  Knitted caps, handmade bookmarks and bracelets. 

Amazon Smile

I don't know if many of you are aware of Amazon Smile.  I know I was not until I got a birthday gift from Amazon from my sister which included a card that said "A gift has been made in your name to the endometriosis society."  That was just as good as a gift and very cool!!  When I asked about it, she told me about Amazon Smile.  If you have an account with Amazon.com, you find a cause you care about, pick one of the societies or foundations associated with that cause, and when you purchase anything from Smile.Amazon.Com, a donation will be made to the charity or cause you have chosen.

Note From the Author

Author's Note: This is a blog about my journey with my disease.  I write about things in my life that affect me on that journey.  Many people have asked me more questions about my mother... I appreciate all the concern and love, but I will not be writing about other people in this forum.  I don't use names and I am not going to presume to write about anyone else.  Obviously there are life events that impact how I am feeling, how much pain I am having, the stress level of the day, etc.  I will write about or touch upon these things as they can cause problems for people with endometriosis.  My aunt's death, my mother's cancer... these things affect many people who love them and each person will react differently.  This blog, however, focuses solely on me, my struggle with endometriosis, learning to live with that, and my journey along the way.  I am not telling you how a death may have felt to anyone else, or how I would feel about a parent having cancer if I wasn't also sick.  Endometriosis colors everything in my world right now and I am telling my story and feelings from that perspective.  

My purpose here is: to educate as much as I can to help people understand endometriosis; to give myself a place to explore my feelings and reactions solely thinking about me; to try to connect with friends, loved ones or others with this disease because I think it is so important to be able to see that you are not alone, your suffering is real, and other women out there are able to empathize and understand your experience.

Thank you for reading.

Chemo Day 1

So Mom started her Chemo treatments today. I haven't posted in a long time as I've just been digesting everything going on with her. The hospital isn't really helping plan or keep my schedule under control...  They won't give a time until the night before, they told us we'd be there three hours (so I budgeted my pain meds accordingly, not bringing extra doses), but 3 hours really meant 7 hours! :(  Not so great for my body or pain management but I decided to tough it out and stay anyway. It was Mom's first treatment, an unknown, embarking on a scary time for her and she needed someone to be there. Nobody was around to relieve me, so I stayed. I wanted to stay to be with my mom, I just had wanted to schedule better or have someone else with us.  It's definitely a long day for me. I got 1 hour of sleep last night, so combine that with my body in general and missing the time I'd normally take my second dose of meds and it's a bit problematic. For instance, if she needs a prescription tonight, I have no idea how I'm getting it...  If I take additional meds, I don't drive... If I keep putting off taking meds and push through, the pain gets worse which also makes it hard to function, as well as making the pain harder to get under control later. 

Overwhelmed

People have asked me recently how I'm holding up (my mom recently had cancer surgery if you didn't know) and I keep coming back to one word: OVERWHELMED.  I am overwhelmed by everything.  I feel like if I were a cup, full with all the crap going on dealing with endometriosis and the death of a family member and other various crappy things, I would be brimming over.  I literally feel so miserable at times that I don't want to be around people because I might infect them.  (Didn't Meredith say something similar on Grey's Anatomy?  Hmm...)

In a little while I'm going to the doctor for my appointment.  Normally I don't feel much of anything about this since I'm pretty used to it and all but today for some reason I am feeling overly anxious.  Maybe it's not the doctor at all and just me, I don't know.

Showers

Showers.  (I know, I fooled you into thinking I was talking about snow showers after the week we've had... but I'm not).  I'm talking clean, watery, soapy-goodness showers.  I have realized that there is a direct correlation between how I'm feeling and how often I'm showering.  The better I feel, the more I shower like my old/normal self.  The worse I feel, the less I shower and as the days go by, the more I feel like a sick, dirty version of myself.  Today is Wednesday.  I haven't showered since the weekend.

Stress

So I have a list of topics I have yet to post about and I haven't been feeling well enough to write about any of them today.  It's very frustrating.  I'm feeling more pain for the past few days than I have since probably before surgery.  I haven't done anything exerting and yet there it is.  I guess I could direct you to the posts on tiredness or setbacks but I'm typing my post today because usually I would not chronicle today at all.  I was in pain so I had no desire to think about anything interesting I could write about earlier and now I am ok because I took extra pain meds but not thinking as clearly as I would like.  So normally I would just skip today, but days like these are important in understanding what my life is like still even though I would love to hide them away and deny I still have them.  Instead, I will give you a brief insight into my stream of consciousness during times like these.  

I hate to let myself admit it but today's pain makes me nervous.  It feels like pre-surgery pain...  I am hoping that I can attribute it to the overly stressful two months I've had because otherwise something might be wrong and I just do not want that at all.  I'm supposed to be gaining strength and overall health and having LESS pain, but that is not happening right now.  I was annoyed to be feeling bad while my sister was visiting because I couldn't even really sit and chat.  Small talk is the first thing to go when I feel pain.  (For my purposes, I would say that I'd been feeling "discomfort" mostly.  It's annoying and can interfere with me get my real life back, but it is way better than what I would call "pain."  For the past maybe three days I'd call it pain.) 

Weekend

I am still not feeling well today... a good night's sleep seems to be seriously eluding me.  I may post later today if something strikes me, but my sister is visiting for the weekend... supporting my mom after her cancer diagnosis so if I end up not posting, I will be spending time with her before she has to leave again.  I miss her... I wish she lived next door!  

Awareness

So today I came across a post on another blog that I think bears re-posting.  Since I am living with endometriosis and I didn't even know that a lot of awareness events existed, I can only guess that most of you didn't know either.  I have learned that March is Endometriosis Awareness Month (along with my birthday!), yellow ribbons symbolize support for Endometriosis sufferers and now this.  In fact, here is the main article on the EndoMarch website.  I am pretty excited that someone else thought to describe endometriosis like I did!  (I did NOT write the following two articles.  If you want to read more from them, please see the cited sources).

"Endometriosis: the cancer-like disease you should know about

Want to make a difference in approximately 200,000,000 lives?
Then please join us for the first ever Worldwide Endo March (Million Women March For Endometriosis), scheduled to occur in dozens of capitals around the world on March 13, 2014.

Though you don’t hear much about it in the news, endometriosis is surprisingly common, with at least 1 in 10 women and girls, usually of reproductive age, affected and suffering with crippling pain in the prime of their lives. Yet, often they receive woefully inadequate medical care, including 6-10 years delay in diagnosis, mainly because endometriosis pain has been accepted as normal for centuries. Pre-teens and teenagers are especially susceptible to misdiagnoses.

You may have heard that endometriosis can destroy the uterus, ovaries, and fallopian tubes. But did you know that it also:

• Shares many features with non-fatal cancers?
• Can metastasize much like cancers essentially anywhere in the body?
• Can potentially cause irreversible damage to essentially any organ or structure, such as: the lungs, liver, heart, eyes, kidneys, brain, bladder, bowel, diaphragm, nerves, and muscles?
  
  Your sister, mother, daughter, or even you may have it, yet be given the wrong diagnosis and therefore the wrong treatment, all of which can potentially lead to irreparable damage, infertility, and a life of unspeakable pain.
  And so, that’s why we’re marching – to turn back the tides of centuries of misinformation – and let the world know that endometriosis is a serious disease with severe medical consequences if left untreated."

(Courtesy of http://www.millionwomenmarch2014.org/)

Setbacks

I try to stay positive and think about my goals and about what I can control but sometimes when I think about the setbacks I've had that I have had no control over, it can be overwhelming.  I feel like a big cloud of bad luck has been just hovering over me for a few years.  I never thought about luck before getting sick.  I used to think that a setback would only serve to make me a stronger person in the long run... but when you pile a bunch of them on without giving a bit of relief or showing me SOMETHING good that has come from them, it gets to just be too much.  So please don't respond with cute little quotes like "A setback is just a set-up for a comeback."  Or "Whatever doesn't kill you makes you stronger."  Just... no. 

Since my first surgery, aside from all the daily endometriosis stuff and procedures or things associated with that... my grandmother had a stroke... my aunt was diagnosed with breast cancer... I had a kidney stone that led to a bladder infection and UTI... a family friend committed suicide... I got a random infection in my toe... my aunt passed away... and today we found out that my mother has cancer.  (And no, the irony of my previous post actually talking about cancer does not escape me).