‘Twas the night before…..

Twas the night before chemo and all through the house
not a creature was stirring not even a mouse.
the calandars dated and checked up with stars
the schedules filled and thougt of with care
so we would sleep and the day woulg appear
soon…
i could here them say chemo is coming…..
lol. There’s my attempt at cancer humor after a freaking hard day. Showed up to OHSU bright an early ready to kick Parkinson’s ass. Had PT first with,…..we’ll call him Steve. lol  Steve is a bit timid for me, I like my pros to be kind of well ass kickers, and well his not. Not that Steve doesn’t constantly surprise me with his genius obvs OHSU doesn’t hire complete idiots. So Steve, pt today. Balance test, bike riding and walking all basic shit but…… I have Parkinson’s disease so my brain is rapidly forgetting how to move grrrrrrrrrrrr. Stupid PD. 

Then after a joville hr with Steve I go to see….. Blondie lol, who is well, has my full attention. 😄 we cried and laughed and talked assistive technology, more laugh and tears, cancer talks, PD talks and how the cancer treatments are and could effect my PD….. Note the slow and steady switch of topics…… Pulled a fast one …. So I go to Transitions my neuropsychologist. As I lovingly call my shrink. Basically she’s awesome. She doesn’t pull any punches , tells me straight up that I’m not looking at all the options on things , also validates a ton of my emotions around cancer and Parkinson’s disease. Apparently it is pretty rare to have both cancer and PD, hmmm, who knew. Today was tough bc we talked about the fear of dying and the fear of living and going through the process of chemo and radiation which apparently can also kill me. Thanks for being real doc, #realtalk. So after far less tears than I expected she taught me some coping methods to dealing with the very real waves of sheer terror and panic that come with the dx of cancer. Especially when it’s not a simple snip and clip, bad boy, don’t get so much sun kind of cancer. This is the deep inside sorry we can’t cut you open and get kind of holy fml this shits real I might die kind of cancer lol. Phew …so yeah , for good or bad my stories and life always seem to have a but,and,or,so,to them. So if the ct scan is 100%correct and the cancer is localized in my neck and not the surrounding lymphatic system then even at stage 3 this cance can be successfully treated 85% of the time in stage 2 and hopefully as well in stage 3. Dr wouldn’t tell me what his fancy book really said about stage 3. I’m sure bc he knows I’m a freaking stable train wreck. But if it’s treatable them we are going to fight the fuck out this because I seriously don’t want to die right now. 

Some sad things where talked bout today. End of life stuff…. Things that as a loving dad and semi responsible member of society needs to put in order before things like oh….. Chemotherapy and radiation therapy..or climbing Mt.Everrest, driving a race car or running with Bulls. Ya know just that are smart to do because I really do love everyone I’ve met. Sure maybe I don’t want to hangout with everybody lol but, I love’m and wish only blessing and love for all of you. Today, I learned that my desire to be or have a companion around me is normal and not co-dependent, love the fact my shrink thinks that term is shit and that humans are social creatures by nature and it’s totally and completely fucking normal for me to feel completey displaced and isolated by going through this virtually alone. Or physically alone and virtually supported is more like it lol. But like I said to hear that I’m not a totally weak spirited puss was nice. Right then, tomorrow is the big day. Time to have a very mellow 😑😑😑😑 night at home.

As always Be Brave ,Be Bold and Thrive in the life you have.©2012
and its okay to be scared, just dont live in scared for to long because there is no reason to suffer twice. all my love.
Benjamin.
“a life in progress.”

Science time..and a day worth living..

First I should say that any day I wake up is worth living. I’m thankful that even in stage 7-8 pain for months on end that I can say life is worth living. Hope is still worth fighting for and there are paintings to be done right? No time to be crying in my soup. Matter of fact I think we should listen to some music before we read much further because below although entirely factual its pretty depressing. So first music then science and maybe some paint.

Science time:
Entacapone (Comtan)
Prescription drug
Consult a doctor if you have a medical concern.

Is given with levodopa/carbidopa to treat symptoms of Parkinson’s disease, such as tremors, stiffness, slow movement, and problems with balance.
Side effects – Warnings – How to use
National Library of Medicine
Brand name: Comtan
Pregnancy risk: Category C (Risk cannot be ruled out)
May treat: Parkinson’s disease
Drug class: Catechol-O-Methyltransferase Inhibitor
Other drugs in same class: Carbidopa/Levodopa/Entacapone, Tolcapone
This is the darn med that I have been out of for the past 6 days. Finally I have it back in my system but I’m not sure I really enjoy it.
Precautions While Using This Medicine

It is important that your doctor check your progress at regular visits to make sure that this medicine is working properly and to check for unwanted effects.
Do not stop taking entacapone without first checking with your doctor. Your doctor may want you to gradually reduce the amount you are taking before stopping completely.

Nausea may occur, especially when you first start taking this medicine. Also, an increase in body movements and twitching, twisting, or uncontrolled movements of the tongue, lips, face, arms or legs may occur. Your doctor may need to adjust your dose of levodopa/carbidopa if these movements occur.

This medicine may cause some people to become dizzy or drowsy. Make sure you know how you react to this medicine before you drive, use machines, or do anything else that could be dangerous if you are not alert.
Dizziness, lightheadedness, or fainting may occur, especially when you get up from a lying or sitting position. Getting up slowly may help. If you should have this problem, check with your doctor.
Hallucinations (seeing, hearing, or feeling things that are not there) may occur in some patients.

Parkinson’s Disease:

Symptoms may be mild at first. For instance, you may have a mild tremor or a slight feeling that one leg or foot is stiff and dragging. Symptoms may affect one or both sides of the body, and can include:

Symptoms include:

Slow blinking
Constipation
Difficulty swallowing
Drooling
Problems with balance and walking
No expression in the face (like you are wearing a mask) 😉
Muscle aches and pains
Movement problems, which include:
Difficulty starting movement, such as starting to walk or getting out of a chair
Difficulty continuing to move
Slowed movements
Loss of small or fine hand movements; writing may become small and difficult to read; eating becomes difficults
Rigid or stiff muscles, often beginning in the legs
Shaking, called tremors
Usually occurs in the limbs at rest, or when the arm or leg is held out
Goes away when you move
Eventually may be seen in the head, lips, tongue, and feet
May be worse when tired, excited, or stressed
Finger-thumb rubbing (pill-rolling tremor) may be present
Slowed, quieter speech and monotone voice
Stooped position
Low blood pressure when getting up, sweating, drooling, lack of body temperature control. These problems are due to something called autonomic dysfunction.
Other symptoms may include:
Anxiety, stress, and tension
Confusion
Dementia
Depression
Fainting
Hallucinations
Memory loss
Expectations (prognosis)
Untreated, the disorder will get worse until a person is totally disabled. Parkinson’s may lead to a deterioration of all brain functions, and an early death.
Most people respond to medications. How much the medications relieve symptoms, and for how long can be very different in each person. The side effects of medications may be severe.
Complications

Difficulty performing daily activities
Difficulty swallowing or eating
Disability (differs from person to person)
Injuries from falls
Pneumonia from breathing in (aspirating) saliva
Side effects of medications
Calling your health care provider

Call your health care provider if:

You have symptoms of Parkinson’s disease
Symptoms get worse
New symptoms occur
Also tell the health care provider about medication side effects, which may include:

Changes in alertness, behavior or mood
Delusional behavior
Dizziness
Hallucinations
Involuntary movements
Loss of mental functions
Nausea and vomiting
Severe confusion or disorientation
Source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001762/#adam_000755.disease.prognosis
** as morbid as the information above is, I love the fact that it’s bold face honest, in our society we like things to be pretty, oh it’s okay pd just gets you foundations and sit-coms. Breast cancer gets you pretty pink ribbons and of-course the new craze I saw “we got your six”. Really so when a 50c takes my partners head and turns it into pink mist, you got my six really e’f you. Sorry that commercial today made me mad. How about you provide medical care and livable pensions after we come home changed forever. Sorry had to rant. I know who has my six and its not a new cool shiny pin, that’s pink,silver or gold. But hey deep breath, 1,2,3,4,……5,…..6,,,,,,,,, ok all better. Let’s paint.

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These piece was done in 1996 and was a gift to my late father, it painted in oils and sculpted using a secret recipe that I still use today in all my heavily textured work.
Who I was:

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What I am:

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Much love, hope and strength to all and to all goodnight.

Namaste
Benjamin
2013

Because We Can

http://connectivetissuedisorders.wordpress.com/2013/02/02/have-heart-for-marfan-sydrome/ This my dear friend Katie’s site February Is Marfan month and in honor of her courage and selflessness I’ve joined her in be effort to raise awareness. May the kindness and love of others help help the sick of … Continue reading

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