The Good.. The Bad.. The Ugly.

As of Tuesday this week I will complete six weeks of radiation therapy.  I am very happy that this chapter in my journey is about to close. My relatives and friends are very happy as well. 

Most, however, do not realize that I’m not going to be magically cured after Tuesday.  I definitely wish that were the case. Unfortunately this is one of those long distance marathon illnesses. It will be with me until my last breath. So lately I’ve been considering writing for a few online publications to help bring awareness. It’s extremely frustrating to have a chronic illness when you look positively fine in your appearance. I receive all manner of looks when I park handicap. I mean I don’t have a banner trailing behind me that says, ” hey, I’m doing 6 weeks of radiation for a recurring brain tumor, I feel like I’m wearing a concrete overcoat.” I’m usually smartly dressed with hair done, and God forbid, a smile!

I’m smart enough to know that folks mean well and not everyone is a walking medical journal like I have been forced to become. But it seems it’s all anyone wants to talk about with me. When I have lunch with someone, the last thing I want is to talk about this thing in my head. I’ve had to discuss it everyday with Drs., Specialists, my therapist ECT.

 I want to talk about summer plans! My grandkids! Your grandkids! Your work! Anything and everything except this thing in my head. It allows me to feel  normal for just a brief moment in my life. 

So the point of this writing is this, for myself anyway…I am so much more interesting than this illness. I’m coping the best way that I can. If your a friend please, let’s hang out and have FUN! 

Angela Rakes: Reaching for Daylight

The Greening

The paintbrush has been dipped in sap green and little by little my world is alive with color again. Purple of the wisteria, pink of the dogwood, a most welcome respite from the cold hard edges of winter. Spectacular sunsets and late starry nights are on the regular now that darkness gives way to light. The rain falls steadily and the Earth gives her renewal. Peepers are peeping, nightbirds are singing, bringing in the promise of a new day. The trees are dressed in their finest full density. Every living thing turns their face to the sun, the light is found in the living. Nature is once again giving, the greening has begun!

Angela Rakes-Reaching for Daylight

Week 2…

Week two of radiation treatments have begun. So far the symptoms I have are extreme fatigue and headaches have intensified.. 

 I am told week three will be horrendous, that’s when the nausea/vomiting, hair loss, and possible seizures will start to happen along with the fatigue and headaches. I’m not really looking at these treatments in terms of weeks though, I’m choosing day to day. I had a good weekend and today wasn’t too bad either. 

My exact diagnosis is Neoplasm of unspecified behavior of the pituitary gland.  Its a different type tumor than the one I had surgery for, that one was more like a cyst. This one is solid, fast growing. It can be benign or cancerous and they don’t know which, I’m hoping for the benign. 

My husband drives me every day and I thank God for his support. We sang old country songs all the way back home today, he has a way of making everything so bad. 

I’ll close this post out with a favorite quote: “In the midst of winter I found within in me an invincible summer.”

Keep reaching for daylight

Xoxo

It’s All in My Head…

Tomorrow, well today actually since it’s 3:22 am, I have a CT scan and a thinner slice MRI scheduled to get me ready for my radiation treatments. 

A little history; I have fought this chronic illness since age 25.  My body likes to try to kill me from time to time. 

It began with a dermoid cyst that grew to the size of a cantaloupe during my 5th month of pregnancy with my second child. The cyst was so large it was crowding the baby and had torsed (cut off) blood supply to my left ovary and fallopian tube, the pain I still remember, emergency surgery was required to remove the cyst, ovary, and tube, I then carried second child to term, a healthy baby boy.  My Ryan, now 22, a blessing and gift from God.

At age 33, I started having strange headaches, peripheral vision issues, and lactation letdown an MRI was ordered and found a large macroadenoma.

 A mammogram was ordered because of the lactation with no rise in prolactin levels. I had a large benign tumor close to my chest wall that was removed. 

Then,  I had transpenoidial surgery to remove the macroadenoma, during this surgery I had a cerebral spinal fluid leak, the surgery was supposed to take 4 hours it took 8 hours. I had no short term memory function for over 6 months afterward. 

At 38 yrs. old, I had an emergency historectomy, I was hemorrhaging, from a huge fibroid spiral cyst outside and bigger than my uterous. I received a blood transfusion for the loss of blood. 

That brings us to present day, 47 yrs. old, my pituitary macroadenoma is back. I’m not a surgery candidate because of scar tissue and complications during previous surgery….So radiation, 5 weeks/5 days a week. This is in hopes that the tumor will shrink, it will take 6 months- to years for this to occur. I will need to have MRIs every six months and see an Endocrinologist every six months as well. My pituitary gland, a pea sized gland at the center of everyone’s brain located behind the eyes and nose will cease to function.

 I have found not many people know what a pituitary gland is, along with your hypothalamus it is the master controller for your entire endocrine system. Sex hormones, adrenaline, cortisol, growth hormone, pancreous, heart, liver, kidneys all require specific hormone levels to function completely and normal. Without those, organs fail and you die. 

Oh! I forgot to mention I have three tumors on my thyroid so I’m also hypothyroid and already take replacement for that. 

I have organic anxiety and depression disorders also, in short… I am a hot mess. 

This chronic illness has cost me jobs, relationships, and of course my health. But…I soldier on, I choose to reach for the daylight and believe that coming soon it’s within my grasp. I adjust my sails to each new normal. I’m thankful for each new day and overjoyed when it’s a good one. I’m grateful for family and friends and most of all my husband that understand while I may look perfectly normal on the outside there is a war raging on the inside. Love and light to all, keep reaching for the light.

 

Prisoner

I wish I had an answer for the pain I’m in. I’d run away but there I’d be again. I wish I had a key for the lock and chain, I’ve tried a few…None of them ever fit. 

So in my self imposed cell I sit, to think and reflect on the choices I’ve made. A prisoner of grand design, to serve a life sentence of my own mind.

Angela Rakes – Reaching for Daylight

Best part of waking up…

Fill it to the top

Overflowing, steamy, aromatic goodness.

Stimulating, daybreaking, eye-opening.

Breathe it deeply in, share a cuppa with a friend. 

Would you have ever imagined such a magical thing could be had brewing water over beans.

Coffee.

My home

Today I thought I’d share some things about the town I call home.  I am originally from Kentucky, the bluegrass state.  A town situated along side of the Ohio River, it’s a tristate area and one can be in Ohio or West Virginia in a matter of minutes. I lived in Kentucky most of my life, my family is there, and I raised two sons there. 

Three years ago during an extremely stressful time on my life, I met a man from West Virginia. My second marriage was ending and I was just existing day to day on some sort of strange auto pilot. My soon to be ex-husband… bless him… Had already moved on with his life.

This man that I met is now my husband of two years. He has lived in West Virginia his whole life, he grew up poor, worked everyday at farm chores and not just his parents work but surrounding neighbors as well. He is definitely the most sincere man I have ever met. 

I never knew this town existed. It’s a very small town population 1100, and that’s hard to believe, they must have counted someone’s chickens.  There are no stop lights. Speed limit is a painful 25 mph and you better do just that because law enforcement doesn’t have much else to do. 

We have two grocers, SAV-a-Lot and the Piggly Wiggly, where everyone knows your name and you not only get groceries but all the town gossip as well. This surprised me when I first landed here, folks just don’t do that where I’m from. I lived in the same neighborhood for over 12 yrs and only knew the people behind me. I would say this is the town time forgot but we also have a McDonalds, Burger King, Subway, even  a Mexican restaurant. 

Children still play outside here, tag, hide and go seek etc. I would guess there are about fifteen to twenty kids in this neighborhood ages 4- 18. They get off the bus in the evening and if it’s a nice day they are all out playing. The whole neighborhood watches them and last summer I bought frozen pops for them. 

The town has a surprising amount of festivals here and the whole town attends them, last year Aaron Tipton was here for July 4th and the fireworks were fabulous. 

Jehovah’s witnesses actually do well here, people are bored and don’t get out much. I should say they do well everywhere but our home…My Husband is the son of a Church of Christ minister, he knows the Bible and can quote book, chapter, and verse. I envy his passion for the word of God as well as his knowledge and understanding of it. As with all small southern towns there are plenty of churches and denominations to go around. 

We don’t have cable tv, we have an antenna with about twenty channels. I am very blessed in that my husband is not a sports fan, he watches zero sports. We spend evenings talking to one another and he plays guitar very very well. 

The home we live in is paid for, no mortgage, but we are in a constant state of remodel.  The home was built in the 1800, kind of a craftsman/farmhouse style and needs a lot of work. It sits on a large lot with very old trees  and our red heeler Hondo has the run of the place. 

There is a good sized state park that’s about 3 minutes from home. There is a gun range, fishing, kyacking, and it is very beautiful in summer. 

Some of my friends often comment to me that moving here must have been quite a culture shock.   After I got over the initial shock of total strangers treating me like I’ve lived here my whole life, neighbors that actually know you by name and come to visit, sometimes they borrow sugar and etc. A nice elderly couple live next door and if I feel up to making dinner we fix them a plate and take it over. A front porch swing to watch the sunset or sunrise. Where you can hear yourself think or peepers or birds. Deer that walk down the street on summer evenings making their way to the apple trees out back. It’s slow and easy here. So l guess it is a culture shock…But a good one. 💖

For My Husband

He came into my life quickly…

No passion burning, but just like an old old friend with an outstretched hand.

A soft and tender male voice in my ear

At the time nothing in life was very clear.

He offered a shoulder for me to lay my head.

We spent countless nights just in silence

While he stroked my hair.

He knew what it felt like to love and to lose and he held me tight.

Softly letting me know it would be worth the fight.

He was willing to search for the woman within and wait patiently for her to decide to live again.

Angela Rakes-Reaching for Daylight

The Crematorium…

I kept an appointment with a neurosurgeon yesterday that had been scheduled for a couple of months. I arrived dutifully a little early to complete paperwork. As I’m parking my car I can’t help but notice a mortuary situated directly in front of the building I am to enter. I chuckle because that is just my personality, I tend to be able to find humor in most situations. 

I enter the building and find his suite. I scan the large waiting area for the sign in window. I notice the color choices, which are unfortunate. A weird salmony peach and green and carpeting …Which everyone knows is not sanitary. I sign the clipboard and make my way to the least congested area of the waiting room and sit on one of the unfortunate green chairs, which is also about as comfortable as a cement block. 

My eyes scan around the room and I chuckle again. There are framed pictures of urns all around the waiting area…Every size, shape, and design of urns. I take a picture of the artwork and decor and of course post it to Facebook immediately, to share my humor and horror with friends and family. 

While I’m posting about the office decor a smiling woman calls my name.  Happily I leave my concrete green block and follow. The usual vitals are obtained and I’m placed in a small stark white room with two chairs closely resembling laundry mat chairs and an exam table. The artwork in here is slightly improved, an impressionistic watercolor with a fall scene. 

Keep in mind this is my first visit to this Dr.   Allow me to explain something about neurosurgeons and neurologists. I have been to more than a few, they are all assholes. Seriously, arrogant, no sense of humor, no emotion…Asshats.

Now, this is probably due to the fact you have to be smarter than the average person, spend 14 years of your life being educated. But they all are smug fellows.

While I’m waiting I hear the Dr. Talking into his recorder after seeing other patients. I can hear the doors open, then close, then I here him dictating his plan into the recorder. My first thought is geez this is a hippa nightmare. 

So finally, my turn. He enters, very poor posture, wearing a suit that is very unstructured and too big in my honest opinion, he gives me the Dr. Handshake, quick and firm, he has a bad combover and looks to be 396 yrs. Old. He sits and immediately starts discussing my history, my tumor, and how it’s not operable and on and on without a break to breathe. I wonder how someone his age has that much lung capacity. I finally get to participate breifly in this exchange long enough to let him know I am very knowledgeable about my condition, and have been through surgery before. Now, I can’t make this up…He says, “oh so you know a lot about this tumor and your disorder.”  Yes, I reply. ” Did you Google it?” He asks. What is your profession? He’s rapidly shuffling papers and making marks on them. I think great… I have offended the great and powerful Oz. He looks at me over his glasses with that ridiculous combover waiting for a reply. I simply said, “Some Google, some library…I tend to research and read about things happening to my body.”  Plus I’ve lived it, your not the only neurosurgeon I’ve ever met. 

A pause…I’m smiling sweetly, because another trait of mine is that I too…When absolutely needed…Be an asshole, only I will do it so nicely most folks don’t know what hit them. I start talking now rapidly because he is trying to overtalk me, another trait that grinds my gears. I tell him the only reason I’m at this appointment is to see if the tumor is operatible, I have already met with a radiologist/oncologist. His turn to respond, he starts telling me all about the surgery, how it’s done. Now, I’ve told him twice that I’ve had this surgery before. So without thinking, I say, I know all about it….I you tubed it. 😂

He walks me to the window, I’m thinking…Even if this tumor was operative and if your fingers were made of gold…You would not touch me…Ever. 

So should any neuros’ read my post. I respect your education, and your large brains…But don’t try to match witts with a menopausal, veteran of surgery, Google using, library going, educated woman. And…P.S. quit being assholes

I Passed the Test

When I die don’t mourn my passing,

Instead remember the times we spent laughing. Remember how I loved to watch the rain. Don’t think of the sadness or remember the pain. Remember me lifting my face to the warm sunshine. Counting the stars on a clear starry night. 

How I loved and forgave, and found good in difficult days. I loved the feel of the ground under my feet. I loved butterfly’s landing softly on my hand, and long summer nights without any end. 

I will remain and go on with each beautiful sunrise at the dawn. With each spectacular sunset before you rest, I am smiling….I lived, I loved, I passed the test.

Angela Rakes-Reaching for Daylight