January 10th, 2014 §
The car has always been a place of refuge for me.
The shower, too.
Water to rejuvenate
Clearing away the old,
Ready for a new day ahead.
The moment of awakening is significant.
I have learned quickly what the next few hours will be.
I try to give a nurse a complete report but I encounter one problem immediately.
I really cannot type accurately.
My body shakes, my hips cry out in bony futile gasps. I gather up my pump cords, release myself from the wall’s grip.
I walk, counter-clockwise around the nurse’s station with a vengeance, trying to push the pain and discomfort away.
……………………………………..
I am Angry at this morning and that which has me here.
The tears arrive.
The radiation pain seems to be on the way in.
How long with it last? Does that mean it’s working? I and everyone else ask.
“I don’t know” is the way to do it. I say it aloud to the dark, embarrassed after the first word that I realize I am alone in the room.
I hear my voice, speaking to someone not present.
I can’t help but cry as I push the pole.
The movement makes it better. It reminds me of being carefree on a summer day, wind in my hair from the sunroof, feeling the sun on my face.
I think of my friends readying their homes for the day before work and school.
I can feel the radiation, where it burns, or at least the spots where tumors are trying to escape their home,
where they try to find new lands to conquer in a cat and mouse inside my body.
It doesn’t matter what stinking metaphor you use for it; in this case, all roads lead to Hell.
I contemplate eyeliner while the nurse stands, patiently waiting to see how I’ve done overnight.
…. But there is no one there.
I focus very hard on the tasks at hand: morning medicine most especially.
I start to tell my nurse that I weighed myself already today. Or yesterday. Or two days ago. But I can’t remember now. And so I remain mum.
In each moment my mind leaves. I don’t know where it goes. But in those gaps which feel like seconds, minutes have gone by.
The tea is divine, hot silky relief from the cold my body cannot push out.
I realize whatever it is I thought I could accomplish at the keyboard won’t happen once again.
I can’t concentrate. I find gibberish on the page. It takes hours to do a few moment’s work.
Extra time lost.
Time lost.
My precious time.
I stay committed to sitting up, bedside, fighting the urge to recline.
I listen to music trying to keep myself alert.
I think about my children, wondering what each is doing…
I realize today I am too foggy from medication.
I won’t be able to do much for a while. I am too busy talking to people that are not there.
I will rest, let the pain calm, let my head settle.
January 9th, 2014 §
No matter where you are
There is always beauty in the delicate unfurling of the morning as
It and its inhabitants come to life for the day.
A chair scrapes on the floor upstairs,
An electric bed adjusts,
An IV pump sounds,
A shade gets lifted to see the twinkling city.
A soft voice enters the room,
Two pills in a plastic cup down the hatch without disturbing a keystroke.
Vital signs are taken, the velcro cuff rips.
Vials of blood from my port,
The soft tapping of the tubes as the tech manipulates them deftly in one hand to keep refilling constant.
An IV pole whines like a morning toddler standing in her crib, anxious for first attention of the day.
Toilets flush,
Breakfast orders placed.
Young doctors starts to trickle in to find out how each patient’s night went.
And then some of the real business of the day starts.
Decisions made each day about life and death.
Who has surgery today,
Or a chemo change,
A transplant,
Biopsy.
Some will go home, some will not be ready.
News will be given.
Each person has a life unfolding here today. But remember it is a life.
Not a diagnosis, not a body part.
But just as the tide goes in and out,
Gives and takes,
So does metastatic breast cancer.
It progresses, taking more,
You hopefully have an arrows left in the quiver to try.
You tame it back and do the dance again. And again.
Leapfrog through treatments trying to stay one step ahead.
There is always adjustment.
It is a shifting target. You’d best be on your toes.
I am at the beginning of what treatments are available for me.
Don’t you count me out yet. Far from it.
Just because this disease can’t be cured doesn’t mean there isn’t a lot of life left in me; there is still so much for me to do.
I am living with cancer.
I want to count the days until I can be home and me again. But we do not know exactly how many are left. Getting closer I hope.
When I get back home it will be a different me, but that is not the point.
This is part of metastatic breast cancer and now I’ve had my first introduction.
It’s been 15 months since I received my diagnosis.
This is the first time I’m needing any type of radiation.
I will have to pull out some more aggressive weapons in chemotherapy options.
But as I’ve done each time, my oncologist and I will research and discuss.
She and I took this photo last night in my room as we talked about what the treatment plan will be for this week to get me out of the hospital. Once we have a short term plan then we will know what the next few months will look like. There is defiance in setting out on a new path.
The first step should be a confident one, not a toe dip into the shallow end.
For now the hospital is where I need to be as we finish evaluating exactly where the cancer is how to best target it. Additionally, we are still are fine-tuning pain control via the pump. It is a process to convert from using IV pain medication (rapid and adjustable help) to oral ones. The excruciating pain that comes from the tumors in my hips and spine demands serious pain management until we can allow time for the effects of radiation and chemo to settle in. That’s been a main focus. The pain will get worse before it gets better in those spots it seems. Radiation pain will precede improvement in many cases like mine.
The discovery in the past two weeks of more metastases was a curveball. But it’s standard practice for metastatic breast cancer. Totally typical.
I have quickly come to care for the people who work on the floor. There is so much care and assistance and tenderness every day. I look forward to sharing some of those stories in the weeks and months ahead. I could not be more grateful for the daily affection mixed in seamlessly with medical care.
Each room has a story.
My room has smiles and laughs and love. It has tears and anger and bewilderment. It has every part of life.
As I attack the cancer cells in my body I must always search for ways to bridge to the outside world. My family and friends have made that easy. They are my heart and soul. The supporters I have online help so much too. Your words of compassion and care keep me going and remind me why what I’m doing is so important. Using the time I have now while I am able to be functional is precisely the point… continue to give those too weak or unable to share the true experience of daily life with this disease a voice. To teach, to enlighten, to share, to support, to fundraise for research… and to always honor those who have died.
As always I could not do any of this without my oncologist Dr. Chau Dang. I love this photo we took last night in my room.
There’s always so much more to say. But I’ve got some time to do that.
So for now, my dad is here for a visit and I’m going to go have a cup of coffee with him… thanks again for the support I receive from so many of you. You know how much I treasure it: it’s my beauty.
Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.
January 6th, 2014 §
The last weeks have not gone as planned.
I had the liver biopsy and PleurX drain put in my left lung on 12/31/2013. I was going to only stay one night for observation and to try to address the pain that I was having. Further tests revealed more information. The pain that we thought was coming from my lung and spine wasn’t just coming from my lung and spine. In fact I have some tumors in my bones in the left hemisacrum and right femur too. The spine tumors are now in more vertebrae than we’d thought.
I’ve actually been in the hospital for 6 days now trying to get the pain under control and formulating a treatment plan with my team. I will need to be here for a while longer. I am starting 10 sessions of radiation later tonight after being mapped this morning. We had hoped to do it in five sessions but for reasons I can’t go into now they have decided this is a better route and will be more effective for the future.
This treatment will stop the current progression of pain, but the way this radiation works for me is that it won’t provide true pain resolution for probably about 2 weeks and then improve further over the next few months. The pain reduction will be cumulative and take a while (long after the radiation is actually over) to see final resolution in my case. I’ll have to deal with this for a while yet.
The side effects because of where they are targeting the beams in my spine will be irritated esophagus, trouble swallowing, nausea, vomiting, and heartburn. The other radiation site in my hips will potentially cause decreased blood counts, pain, irritation, gastrointestinal pain and dysfunction and the like.
My pain is still not under control and I’m on a Fentanyl pump system that allows me to dispense medication as needed in accordance with the pain levels. I will convert over to oral medication and patches when it’s time for me to go home once we can figure out my needs. The pain and palliative care team here is unbelievably caring and devoted. So are the physicians and nurses. I have created an expanded family here already and can’t say enough nice things about the quality of care and total commitment to the patient.
I think for now that’s enough news.
Please, please respect my declaration that I do not want uninvited visitors, any gifts, or any flowers sent during this time. I know the intent might be good, but I appreciate so much those who have opted to instead donate to my Sloan Kettering metastatic research fund instead of purchasing anything for me. I haven’t been able to send thank you emails for those recent donations but trust me, they are appreciated. Good thoughts are also always just fine and have the right price tag!
This is a time when I am dealing with severe pain, a medical diagnosis that is unfolding and serious, and needing rest as much as possible. I do read emails but I am not responding to most at this time.
I was not able to start the clinical trial because of these newest announcements. We will see if I am eligible for it again in the future but for now we have to get the disease and pain under control. I did go on chemo for a few days but it now needs to be stopped during radiation. I will resume chemo after radiation is over and about a week of recovery time has elapsed.
Things change hour by hour, day by day. I’m adjusting the best I can. I hope this will at least let you know where we are, a long way from where I thought I’d be in the first days of this new year. Welcome to the world of metastatic breast cancer.
The car has always been a place of refuge for me.
Link to Twitter