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Chronic Cancer. Permanent. I can’t cut my cancer off with a knife or a laser. I can’t target it with radiation. I can’t kill it on a cellular level with chemotherapy. I can’t be proactive and remove body parts susceptible to it.

I will live with it for the rest of my life. I’ll never know what it’s like to be cancer free. I can only hope it doesn’t become aggressive any time soon. Eventually it likely will. But not soon.

I’ve had cervical cancer removed by laser. I wish I could do the same with this. For them to call me and say it’s gone and it looks like it’s not coming back.

They’re finally cutting me loose from the colposcopy clinic, they said with a smile in their voice.

I want to be cut loose from this.

The reality is, I won’t be. And neither will thousands of other people living with chronic and incurable cancers.

These cancers need research and funding so badly. Lot’s of these conditions are little known and/or rare, but together we are a lot.

A lot of people looking for hope.

Hope for the things people don’t do walks or runs or raffles for.. Or make clothes, shoes and accessories for. At least no where near to the scale of others.

Hope for things that can’t be won.

We won’t fight and win our battle with cancer.

We have to meet it, shake it’s hand, and settle into a lifetime partnership with  it.

We deserve the same attention and effort that all the more common, treatable cancers do. If not, more.

Please, please help spread awareness and help support mastocytosis and other chronic and/or incurable cancers!!

One day I was walking into the grocery store, and a father and his young son were walking past. The father looked at me, then I heard him say, ” I feel like I just saw a ghost!”

Oh I’m sorry my pale skin frightened you (Even though he was white too). Guess your son is going to grow up thinking white skin is unhealthy and unattractive.

And become another one of those shallow douchebags that prefer his woman is tanned.

It’s super annoying but I don’t think anything is as annoying as “You look tired.” That’s one I hear on almost a daily basis and almost always from a stranger.

After getting a great sleep and spending an hour and a half on my hair and make up, only to walk into a convenience store and have the cashier say “you look so tired, how come?”

Because you’re rude and ignorant, that’s how come.

Maybe next time I’ll tell him my rare genetic blood cancer often wakes me in the middle of the night with explosive diarrhea. Maybe he’ll be less inclined to pry next time.

If you see someone who looks sleep deprived and/or like they’re feeling under the weather, you don’t need to point it out to them. They’re likely acutely aware of those facts already.

If your’e going to say anything at all, how about something uplifting and kind.

A “how you doing today?” would even make a lot more sense. Then they can tell you what’s wrong if they need to vent or just say they’re fine, but feel good that someone cared to ask.

Just…don’t tell woman they look tired. Ever.

“You’re too young to have a back like that.” If I had $10 for every time someone said that to me, I would probably have enough money for a new robot back. This is at the forefront of my mind this morning, as every time I do something, my spine shifts in places and ways that spines aren’t meant to. It takes my breath away, and sometimes it’s a good while before I can move at all and then it’s very slowly until I can regain motion.

It always gets considerably worse before my period. I woke up today completely soaked in sweat, hardly able to get out of bed, everything is so painful and inflamed. Standing up sends a shot of pain through my spine and walking to the bathroom to dry off with a towel, sounds like I’m walking over a pile of dry, dead branches. “Snap!..snap!snap!” My hips pop, crack and slide around, my knees and feet snap at least every few steps, my legs throbbing like a 13 yr old in a growth spurt. Feel nauseous and dizzy. Yep. Period must be soon. I go to the kitchen to take morning meds and to check my planner. Oh yes, it’s due in 3 days actually. That explains it!

Now everything I’ve been planning to do today, get’s put aside. I went for a half hour walk, thinking maybe if I just limber up and walk it off. Nope. After I got home, every thing I did would start an excruciating spasm and shift in at least one part of my spine. Now I’m on the couch with a heating pad blogging about it watching Stephen King’s Storm of the Century, and waiting for my meds to kick in. Then hopefully I can still fulfill the plans of  house cleaning and hair doing I had for today so I’m ready, knowing I’m only going to get worse as the week goes. Ah the delicate art of rationing your “spoons” for the day 🙂

I last left off with hopes to start kindergarten on a healthy foot.

This wasn’t in the cards.

Throughout the school year I suffered from numerous bouts of what we could only imagine was a bad case of stomach flu. It always started the same. Extremely intense, sharp, stabbing pains in my stomach followed by profuse vomiting and diarrhea. I also developed a painful fissure during those illnesses, that has never gone away.

The mystery was that my older sister never became ill after me. And as everyone knows, stomach bug’s are highly contagious, especially in children.

Then at age 5 towards the end of kindergarten, my sister jumped on my arm during a game we played of running and jumping over the side of our couch over and over. It broke. Bad. My babysitter was there, determined it was likely broken and continued to put me in a baby seat anyways to bike me over bumpy dirt roads to her boyfriends baseball game.

The first in a series of bad injuries in my life.

Kindergarten didn’t go so well health wise…. And neither did the rest of elementary school….

Below is a collage of my early days of pneumonia/hospital stays, infections, flushing, and my arm cast at kindergarten grad…

 Today is the 5th of March, 2015. But Im going to back up. Waay up. Mastocytosis is a long journey. And it’s all encompassing. Some are diagnosed with the cutaneous version as infants and children. Some have an adult onset of the systemic version. And some are lucky to have both. Like me. From day 1 there was problems. I tried to be born early. When I was born, I had a decent case of jaundice. Endured frequent eye and ear infections. Was hospitalized at 2 for pneumonia and then again the following year. Hopefully everything would calm down in time for kindergarten…Wrong. 

To be continued….

1983 Pic of me pale with spots, barely-there hair and dark allergy bags under my eyes. If only we knew and it’s so obvious looking back and knowing. Need to spread awareness for all forms of mastocytosis. 

These are my current diagnosis’…

Bone…

Skin… 

And this is how I feel about it….

These are some signs of EDS