My Funny Port-a-cath

Today is my least favorite day of the month. It’s subcutaneous injection day  at the chemo infusion center. If you look at the photos of my face and upper chest, the big bandage is over my “port-a-cath,” which is used for my blood draw,  sometimes. Mainly this is an expensive tap into my body, which the nurses flush monthly with heparin to keep it free of clogs and of any infections. That port, which cost over $47,000, was surgically installed in the hospital in March of 2015 about 3.2 milliseconds after they suspected I had cancer. Its never been used for anything but the occasional blood draws. And not all nurses are trained to use it. You can tell me cancer isn’t a successful business model, and I will sell you a bridge that connects Brooklyn to Manhattan.

“Through a port (sometimes called by brand names such as Port-a-cath or Mediport) inserted in your chest during a short outpatient surgery. A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.” From breast cancer.org http://www.breastcancer.org/treatment/chemotherapy/process/how

Mostly, It Looks as though I have a plug used for charging an electric car. Just call me Nicole Tesla. It’s my personal anachronistic device or my PAD. Funny story – While getting a quick car wash a few months back, the gothic teen who was on cashier duty that day asked me if it were a new kind of under skin piercing. I told her what it was and she said, “wow cool!”  I had to laugh instead of becoming indignant. I said, well not really, and I hope you never need to have one installed but you can use me to charge your Prius. To whit she asked, “really?” And with that, I said absolutely, wished her a good evening and reminded her to get a mammogram.

So I get three types of injections today:

Faslodex – two HUGE viscous injections given in tandem by two nurses  into my upper gluteus maximii. It takes 30-40 seconds to get these suckers into my body

XGeva -subcutaneous into my abdomen

Zolodex – subcutaneous into my abdomen

Yes they hurt. A lot. But I’m a good patient and the nurses in the infusion center are angels in human form. Bless their love and compassion.

 

I Judge Myself through Love

 

Every morning, in peace and with the new day upon me, I am thankful for receiving all the love in my life. For even the most radical scientists at the end of their physical lives among  us, individually agreed that love makes us human and matters above all else. God, however  you may define the hand that moves the universe, the great architect as my husband calls god, moves us through love. So I share with you my daily prayer, mantra, ritual sayings, reading, or whatever you would choose to call such a thing. It’s words that represent who I am through my strong belief in forgiveness an through forgiveness, love.

Do not measure self worth in the sum of your mistakes,
Nor in the total of your accomplishments.
Do not allow the weight of the past to drag you back,
Choose forgiveness and receive the gift of the present.
You are the sum of all the love you feel,
And love can only exist where there is faith.
To allow forgiveness is to allow love,
The universe’s light and gift to you.

Your spirit gains no interest by receiving material gifts,
Nor by the amount of currency spent on expendable tangibles.
Inflation of the ego does not measure your self value,
Through receiving something artificially expensive.
Become humble through the joy of giving,
And accept immeasurable gifts from the heart with radiant humility.

Do not cause fear in others through shame,
Fear turns the soul into an empty well.
If you look for truth in fear, the enemy of faith,
You then become your own enemy.
Fear extinguishes love,
Forgiveness enlightens the spirit to love.

Fear shrouds insight and blinds you from truth.
The light of forgiveness shines brightly on love.
Sin lives in darkness wedded to fear,
But insight and forgiveness absolve us from sin.
Search for truth in love and spirit in divine giving,
Give way to the immeasurable light of love,
Allow faith to guide you in lightness and in peace,
All gifts of the knowable present radiate,
And then you fear nothing, not even tomorrow.

Inside Out, Outside In

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Pain. Pain of the physical and psychological, and social kinds, became a part of my world as my condition started to define my world more and more. Sometimes, I feel as though I must live with pain, but why? When pizza burns the roof of my mouth, I know the origin of the pain and the subsequent, between the incisors blister. Nothing really mysterious.

Metastatic Cancer makes life mysteriously painful. Allow me to try to describe it without seeming condescending – in general people experience pain via injury from the outside in; MBC causes pain from the inside out. It causes all kinds of discomfort and sometimes the outside in kind meets the inside out kind and that collision of outside and inside makes things exceedingly uncomfortable. However, there’s no reason to feel any anxiety about letting my oncologist know about it. I’ve no need to feel like a hypochondriac when I have a traveling case full of cancer. And if anyone tells me I’m imagining things, then I imagine life with those who positively support me instead of the negative naysayers. Nothing pisses me off more than a medical practitioner of any kind who doesn’t listen or view the patient as a whole person with lives outside of the hour or less per month they spend inside the office with us.

Palliative care saved my life as I know it today. Palliative care should not carry the connotation of a frightening, stigmatic step before hospice. It’s for our physical and mental well being to keep us from hurting in every way possible. I’m blessed to have my palliative oncologist; I’ll call her Dr. Favorite, since she is my favorite doctor. Dr. Favorite helps me with physical pain through medication and alternative therapy; through talking and knowing me and my situation at home and sending me to therapy to work through my issues and challenges; through navigation of the healthcare system and helping me get the to the right doctors and adjunct therapies; through my fatigue with medication and other therapies such as sleep hygiene and just understanding my body is exhausted and so is my mind. These are a few of the many ways Dr. Favorite helps me. Pain isn’t something we metastatic cancer patients intrinsically must feel because we have cancer. In fact, palliative care means giving us the best life possible while we are able to live the best life possible.

No doubt, I’m a believer in better living through chemistry and have no problem, as I know some of you do, with taking medication to alleviate my intense pain including the allusive bone pain. However, there’s alternative therapy, such as acupuncture and other eastern techniques – one of which I was blessed to receive through Cancer CarePOINT for six weeks called Healing Touch. If you don’t know much about it I encourage you to see your local cancer support group because chances are they have not only heard of it but offer it at no cost to cancer patients in treatment.

Reach out to places where you can find other kinds of support too, because some pain is not the physical kind. In fact it’s pain caused by the daily isolation and by our lives turned 180 degrees from what once was. It’s going to be a long row to hoe for some of us. For some of us. It’s fought on a short path. But I know that no one can really truly understand what it’s like to get up in the morning and hope for a good day only to find no peace, no comfort, no one who understands really what you’re going through, and laying your head down at night with the only comfort of joy that life gave you today was the purr of the cat next to you and it’s godsend of unrequited love for you. To feel needed by something alive.

Here’s a fantastic TED talk on palliative care and Dr. B.J. Miller will blow your socks off with inspiration:

High Scanxiety

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Stila cosmetics doesn’t do very good homework on its pithy quotes on the cosmetic packaging.

With every rising of the sun, think of your life as just begun…

Opening a new palette of eyeshadow by Stila Cosmetics, these two lines, misquoted and attributed to anonymous, I of course look them up in a rapid fire web search. All of one second or less later, the results for Ella Wheeler Wilcox, a prolific poet who died in 1919 comes to my attention. The rest of the couplet based, wisdom filled short poem rang so true and so apropos of my day today.

Headed out for my CT scan and have the usual and very real scanxiety. We metastatic cancer patients all get it as do the cured brothers and sisters when they’ve got to go get a check to make certain the cancer hasn’t spread or returned.

Wish me luck. And thank you Ella for your wise wonderful words. Stila cosmetics – Shame on you for not doing a millisecond of research and giving the rightful citation to the pen who wrote the words in the Wonderful in Waikiki palette. Fix it.