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.
I can see how isolating metastatic cancer can be already.
It has become hard for me to be around other people.
I find myself hiding as much as possible.
When I am in the company of others my mind wanders.
I can’t focus. I feel the need to retreat.
For the time being I just can’t relate to others’ lives which only 6 weeks ago were so similar to my own. Now… we are a world apart.
It’s not their fault. It’s just that circumstances make it so that I am selfish. I try to conserve my energy as much as I can.
Already I can see relationships suffering. There is a fine line between giving space and putting distance. Some are already dropping away, and we’ve only just begun. Others have risen to the occasion and helped more than I could have dreamed. Only true friendships are going to make it under these circumstances. Sometimes the isolation comes from being shut out. Sometimes it comes from locking yourself away.
Phone calls go unanswered, emails often do too. Thank you notes don’t always get written, social commitments get canceled or never scheduled in the first place.
I know that people cannot truly understand.
I don’t want a support group right now because metastatic cancer has a wide range of outcomes. I don’t know if I will be in a rapidly progressing group or not. I don’t know whom to look to that is “like me.” There is no way to know which group I will be in, who my peers are.
Right now I am very sensitive to death, to pain, to suffering. It’s very hard for me to see right now. I’m too raw. I just don’t think I’m ready for a group. But I won’t say I never will be. I need to talk to my oncologists about whether they have patients like me.
It’s difficult to listen to people complain about trivial things, normal things, things I was complaining about two months ago.
Now those complaints just annoy me, or make me sad.
I want to scream, “I want your problems!” And I do. I want that life back. I want to turn back the clock. I just don’t want it to be this right now.
One of the things that bothers me the most about this disease is the knowledge that the way I feel right now is the best I will ever feel for the rest of my life. It’s only going to get worse. That thought terrifies me.
When you feel crappy you want the time to go faster. You just want to get through it.
The problem is that what you may not have is time.
It’s a conundrum. You want the time to pass, but this is the only time you have.
I know so many people say, “No one ever knows how much time they have. You have to make the most of every day, of every moment.” I know that’s true. But the knowledge that there is something identifiable in your body that is a threat, is most likely to be that which kills you, bears a different weight. Of course the doctors don’t know exactly how much time it will be. There is no crystal ball.
Everyone tells me the stories of friends and relatives who were told they only had months and years later they are still alive and doing okay. I am told these stories every single day. I get it. I do. And I love them, they give me hope. But often those people’s diagnoses and particulars bear no relation to mine. Additionally, there are also stories of the people in the other group, the ones who thought they had years and didn’t. People probably have the good sense not to tell me those stories. But they are out there. It’s not that I focus on the negative. It’s not that I necessarily think I will be in that group. But anything is possible. On both sides.
The part that scares me: I’m only at the beginning. I hope that I will get stronger, gain acceptance as I get used to this diagnosis. But I’m not sure about that. I truly believe I could handle this better if I didn’t have so much worry about my children and what effect this will have on them. I wish I could protect them, shield them from this agony.
There are good days and bad days. I must do my best. But being the one everyone is watching takes a toll. Everyone will take their cues from me. I will set the stage for how my friends and family will deal with this: how I handle metastatic cancer matters. I am laying groundwork. I must do it right.
Some days that is an overwhelming task.
“Doing it right” doesn’t mean I have to be positive all the time. Doing it right means I have to be honest. It means I get up each day and do the best I can. For myself, for my husband, for my children, for others who may have cancer and those who will get it. It’s okay to be scared, and angry, and sad, and everything else.
It’s all part of this.
And for me, so is sharing.
I loved the book The Age of Miracles by Karen Thompson Walker. I had the pleasure of meeting the author a few months ago. In the book, the earth’s rotation starts to slow. The days stretch longer with obvious consequences on daily life with some not-so-obvious effects on personal lives. I found the book immensely readable, creative, and thought-provoking (My teen daughter thoroughly enjoyed it too. It’s absolutely appropriate for that age group).
My own life has suddenly taken an opposite turn. It feels as if the world has sped up. The days are flying by. There just isn’t enough time.
It’s only been four days since we had an inkling from my oncologist that I had metastatic breast cancer, three days since I have known for sure. And now, in the middle of the night, it’s time I long for. The Earth is spinning so fast… how can it be I’ve been awake for two hours? Have I spent them wisely? What else could I be doing with those days, minutes, seconds?
I’ve done so much already.
I wanted to share a few ideas on things I’ve done already, many of them pertaining to my children. In the dizzying days after a metastatic cancer diagnosis there is so much emotion that it might be hard to think about what to do. You feel helpless. In some ways you are helpless until you get more information. But in the meantime here are some tips about what you can do.
I understand that not all of my readers have children. But for those of us who do, helping children adjust to this news is vital. It not only helps the children but can help relieve some associated stress for the parent.
- Don’t share your news until you know for sure what your particular diagnosis is. I don’t think you need to know your exact treatment; that takes time. But even knowing a general range of what might be used is helpful. If you have had cancer before, children will usually want to know if you will be doing the same thing (especially if it has to do with hair loss) or if it will be different.
- In my case I needed to have a mediastinoscopy with biopsy after my status was confirmed. It’s an outpatient surgery that inserts a camera through an incision in your neck to grab some lymph nodes for biopsy. I decided to focus on that concrete event mostly… it’s something children can wrap their heads around… Mom is going to the hospital (not uncommon in my household), having a small operation, will be back tomorrow night. I explained the cancer, the metastasis, and answered lots of questions, but I think the “one step at a time” was more easily tangible with the surgery as the immediate hurdle. If you will need an overnight stay for your particular surgery I think it’s best not to spring that news on children if possible. An overnight absence is best with a few days’ notice. Children, in my experience, are usually a bit clingy after bad news and that would provide the opportunity for follow-up questions and reassurance.
- Be sure you understand your diagnosis. Explain what words mean to children and to your friends. There are many misunderstandings about cancer and stage IV cancer. The word “terminal” might be scary. Stage IV cancer is not the same diagnosis in different diseases. Prognoses vary and some types of metastatic cancer can be slow-growing or respond well to treatment, allowing years of life.
- I think the phrase “it’s not curable but it is treatable” is important to teach and use.
- Wait to share your news publicly until after you have told your children (except with a few close friends you can trust to keep the information to themselves. This determination may not be as easy as it sounds). This also gives you a day or two to begin adjusting to the news so that when you do discuss it with your children you might have emotions a little more in check.
- As soon as you tell your children, be sure to tell adults who work with your children on a regular basis. If your children have learned the news, by the time they go to school, lessons, and sports, their teachers need to know. Email coaches, teachers, school administration, guidance counselors, school psychologists, and music teachers. Grief in children is complicated and it’s important that all of the adults know and can be on the lookout for odd behavior. Also, they need to be understanding if things don’t seem to be running as smoothly at home or a child seems tired or preoccupied. Two-way communication is key. Adults need to know they have the opportunity to bring any problems they see to your attention easily. Encourage them to do so, whether what they observe is positive or negative.
- Use counselors, especially school psychologists. My first call yesterday morning before I left for surgery was to reach the high school psychologist. Because Paige is in a new school (high school) I didn’t even know which person it would be. Even though it was only 9 in the morning when I called, the psychologist had already received my email (forwarded from the guidance department to the appropriate person) and had a plan in place to find my daughter during 2nd period study hall. She was able to introduce herself, talk to my daughter, and let her know how to get in touch with her as needed. They set up an appointment to meet to talk more in depth after their initial chat. Paige likes her, feels comfortable with her. This resource is invaluable. After my mother-in-law was killed in a car crash 3 years ago, the middle school guidance counselor became a refuge for Paige. When she was sad, distracted, needed a place to go have a good cry or talk, she had a safe place with an adult to help her. These individuals are part of my team. We are working together and it’s so important to use them.
- I have always felt that it’s important to be honest about a diagnosis; that is, open and public. I know this doesn’t work for everyone. The downsides of being public about a diagnosis are outweighed by the negative pressure for children if they have to keep a secret and bury feelings about such a serious topic. Children take their lead from you. If you are up front and comfortable discussing it, your children will learn to be that way, too.
- Call your other medical professionals and tell them of your diagnosis. Not only will they want to know because they care, but there may be instances where treatments may need to be examined or medications evaluated more often (for example, my endocrinologist wants to monitor my thyroid hormone levels more often than usual). They are all part of your team. They want to know. Many of the most touching and heartfelt phone calls I got were from my doctors this week. They cried with me, gave me information, offers of help, and caring. It also means if you have a situation when you need urgent medical care their office will already be aware of the situation and will likely respond more quickly to get you in to see the doctor.
- A carefully worded email is invaluable. Accurate information is documented so people don’t spread rumors. Friends can refer back to it if needed without asking you. They can forward it to other individuals easily, as can you. Choose your words carefully. The words you use will be repeated so make sure the email says what you want it to say to friends and relatives. The right explanation is much more helpful than a quick one sentence Facebook status update. People will have questions, and you can head many of them off by including that in your email (if you so desire).
I will be posting more tips about what I’m doing in the weeks and months ahead. Hopefully they will help you or someone you care about. There is so much you can’t control during this time, and that’s unnerving. Even taking steps like these can give you concrete tasks and a feeling of accomplishment that you are helping yourself and those you love.
But as I’ve done each time, my oncologist and I will research and discuss.
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