Tuesday, March 5, 2019

R-E-S-P-E-C-T the Patient

After 7 years of living with metastatic breast cancer, I can say that I am now what they call a professional patient.  I have seen most everything, various rules, procedures, protocols cancer centers observe. But past that, I am also a regular human being.  I have a job, a husband, four dogs, two cats, a very active social life, and an extended family. A life.  I juggle that life with multiple doctor appointments, treatments, and diagnostic tests. Sometimes this can be a challenge.  I am lucky in that my previous and current bosses have been very understanding of my need to run to appointments or take time off for medical needs.  (Many cannot say the same.)

Still, managing numerous appointments with work obligations, family, and friends is a challenge. And lately, the challenges have been increasing.  I recently switched oncologists with the goal of working with a doctor who would listen to and respect my goals in treatment. This was a good move. With that move, though, I've had additional appointments so I could be introduced into the new system. Along with this, I've been newly diagnosed with portal hypertension, requiring yet another doctor appointment be added to my roster.

Learning this new system has been demanding at times. There was the run-around of discovering I could not print out the order for my tri-annual echocardiogram from the electronic records system to give to my cardiologist, who is not in the new hospital's system. This took a few hours and several misinforming phone calls, but I finally got it. I now know to ask for a print-out of the order from the doctor as she orders the echocardiogram. Lesson received. Learning the procedures in a new setting takes time. I catch on quickly. I expected this. Par for the course.

Today, though, took the cake. After I left my oncologist's office, I received several emails from the electronic records system indicating appointments were made on my behalf.  I'm not fond of people making appointments without asking me, but in this case they were appointments for infusions scheduled every third Friday at 1:30 pm (a day and time I'd requested ahead of the scheduling). The appointment I did not expect, however, was a visit to the lab for a blood draw at 11:45 am on the day of one of my 1:30 pm infusions, a time almost two hours before the infusion.  Accepting this appointment would mean I would have to use two extra hours of my sick leave, and after I would be stranded at the hospital for at least an hour and a half before the infusion.  I called the cancer center and asked if this appointment could be moved to my 1:30 pm infusion time, since the nurses tend to draw labs from my port. Nope. The scheduler insisted this was the way they did things and if I did not have the draw done at least 45 minutes in advance of the treatment, I would not receive the treatment. She insisted I would have to arrive for the 11:45 am lab appointment or else.

WTF? Show up two hours early for labs? In the past, the nurses drew the blood from the port, and the first results came within 10 minutes. If the basics were good, we went from there.  I expressed this thought and was again met with a wall.  After several minutes, the scheduler blurted she'd have a nurse call me, so I happily hung up and waited for that call instead.  Fifteen minutes later the same scheduler calls back and tells me, it is what it is, but they could move the appointment 10 minutes later to 11:55 am instead of 11:45 am.

When she asked if I could make this time instead, my reply was a simple, "I'll do my best."

Translation for "I'll do my best?"  I'm coming at 12:30 pm.  You said they needed the blood 45 minutes in advance, so I'll give you an extra hour. But I refuse to let you dominate my life by requiring me to waste two hours of my time because you want a two hour cushion.  I have a life and just because I deal with cancer, and will deal with cancer hopefully for years, does not mean I'm giving that life up in order to make you happy.

Frankly, I'm just stubborn enough,that if they refuse me treatment based on my not arriving two hours before the infusion, I'll go ahead and kick it, doing so right in their reception area.  This would be a spectacular advertisement for their cancer clinic.  I'm at the end of my rope with all of these extra appointments and rules that devalue my time.  Don't piss off a cancer patient who's at the end of her rope, because she might take you with her.

These little things, time-eating bureaucracy moments, matter.  I deal every day with a life-threatening disease, but I am still living my life.  Sitting in a hospital for two extra hours just because the scheduler says so chips away at that life.  Do not ask me to show up two hours early just because.  Print out that order for the echocardiogram and hand it to me, instead of forcing me to spend two hours calling multiple people in your organization only to find out I need to come back to the clinic for a hard copy of the order. Do not tell me that the requirement to add people to my HIPAA consent form, allowing loved ones to talk to my doctor about my medical needs, is that those people must come to your hospital in person in order to show their ID to you.  Some of these people live in Wisconsin and Minnesota, not in Washington, DC.  Rules for rules sake are simply a way to suck the life out of people who are already trying very hard to stay alive.

Respect my time. Whether you like it or not, I am paying a great deal of money for your service and for your doctors' and nurses' expertise.  Even if you've come to see yourself as the one with power in this relationship, ultimately, you are not.  I can move my business elsewhere. I can speak to someone higher up about how these crazy, odd rules affect patients.  And most importantly, I can choose to stand stubbornly in front of your desk, making YOUR life difficult, because that's the kind of people I come from.  You may outlive me in this exchange, refusing me treatment due to inane, burdensome rules. But you will be left with my dead body laid out on your desk, a smile of sick satisfaction on my face, and moving that stubborn dead body will be a bitch. I promise.

Sunday, October 14, 2018

Angels in Disguise

Riding the metastatic roller coaster can be challenging, to say the least.  As my friend Shera Dubitsky, a wonderful counselor at Sharsheret describes it, metastatic cancer is always there. It's like a radio that is always playing. Sometimes the volume is low and sometimes the radio is too darn loud.  For me, recently, the volume on the metastatic cancer radio has been too darn loud.

What that translates into is constant worry and an inability to sleep, which only adds to the radio's blaring sound.  This anxiety is certainly understandable.  I have just switched treatments, which has yet to be proven as working (scans are in December), and have been having to adjust to the side effects of this new treatment (Perjeta is particularly known for causing gastrointestinal issues).  On top of this, I've also just switched to a new cancer center only to find out that the new oncologist has a tendency to not listen to my concerns, it's a bit her way or the highway, and that the system has some confusing and strange rules such as all patients need to be out of the infusion center by 4:45 pm since all the doctors have left by then, no matter how the patient might be faring after their treatment.  My guess is that this rule is based on concerns about liability and the desire is to transfer that liability on to the street or to the local ER.  So I have been wracked with anxiety and concern for multiple reasons, and the result is that I have been spending my nights plagued by high-level panic and very little sleep.  This has taken its toll.

This last Friday was one of those nights.  I was up most of the night, panicked, attempting to get my mind off thoughts of the future by listening to music, reading, or just sheer power of will.  It wasn't working.  By the time my alarm went off Saturday morning I had gotten maybe 3 or 4 hours sleep out of the 8 I typically need.  I was exhausted, but once day comes, I usually can get up and go about my business.

Saturday mornings I attend an Alcoholics Anonymous meeting and I've committed to bringing a pint of half and half to the meeting for the morning coffee that is provided.  I parked, went into the local grocery store, and walked back to the dairy section.  An employee was working in the area, cleaning the glass doors of the cooler and re-stocking shelves.  The half and half was on the top shelf of the cooler, and far back, so my 5'4" self could not reach the pint.  I asked the employee if he could reach it for me.  He turned to me, said a few words, and then pulled the half and half off the shelf.  He handed me the pint, looked me in the face, quickly touched my shoulder and said, "Take it day by day."  At first I thought he was making a general statement to me, something he said to everyone, like "Have a blessed day" and I didn't think much of it.

But he continued by saying, "Whatever you're going through, know that there are people who care about you. Give it all over to God."  My mind registered shock.  I thanked him and then I walked away.  As I walked down the grocery store aisle, the shock increased.  How did he know I was in distress?  As I continued down the aisle, I almost broke into sobs.  I paid for the half and half at a self-serve checkout to avoid possibly breaking down in front of a clerk, and I rushed out the door.

Later, at my AA meeting, I told this story and then I finally cried. This man working in a grocery store did not know me, yet he had somehow sensed the yawning fear in my soul and spoken words of comfort to me.  He had provided the comfort I so badly needed, a human voice telling me that somehow everything was going to be all right, that all I needed to do was take it one day at a time.  That is the key to living with such a horrible truth as a terminal disease, take it day by day. But it is easy to move out of day by day and into the wreckage of my future when the disease becomes challenging.  This stranger was helping me to move back into a place where I had a little bit of control, how I dealt with the cancer during that one day, and letting my fears go to some other place, a higher power, God, or whatever you call it.  To tell you the truth, one thought I had as I walked out of the store was that I should invite that man to move into my house so he could say this to me every day.  I could use hearing this wisdom every day.

However he knew my story, he spoke a series of blessed words to me, words that save my heart and soul, and I am grateful.  He may have been stocking shelves in a grocery store, but to me he was an angel in disguise, a reverend, a rabbi, a teacher. Perhaps he needs to put down the milk cartons and pick up a preacher's stole instead. While the world does need milk, in my mind it is in greater need of words of comfort, and I am very grateful that that is what he gave to me.  I can't even think of how to repay his kindness, but I am very, very glad that on a Fall Saturday morning, after a night of anxiety driven by lack of sleep, I went into a grocery store to buy a container of half and half that was too high for me to reach, and I asked for and got the help I so desperately needed.  Thank you.

Monday, September 17, 2018

Lost In The Medical System

I have been at the same cancer center for six and a half years. My first oncologist saved my life, and then when she took a break from clinical care due to burnout caused by problems with management (hint, hint), another talented oncologist continued that excellent care. Over the years, the people providing my medical care from the doctors to the support staff, have become so important to me I invited them all to my wedding two years ago. Several showed up!
So, it breaks my heart to leave them for a different clinic, but I feel I have to because for the last several months I have been feeling lost in the medical system.
Feeling lost in the system has been taking away my hope. And hope is what helps keep me alive in this Stage IV cancer diagnosis.
For several years now, my health has been chugging along. I responded well to Kadcyla and tolerated the treatment well. No need to call in triage nurses, conundrums, or extra worries. Many months ago, though, I began to experience post-infusion reactions to Kadcyla – chills, fevers, elevated heart rate, faintness. Kick in the concern. Thus began the calls to the triage nurses and contacting the doctor, and thus began the very slow, almost annoyed responses from the nurses.
After a few months of frustration, I spoke to the doctor. I asked if her patient load was too high and expressed I was worried she would not have the time for my now more-complicated care. She listened with empathy, and she acknowledged her patient load was heavy (she is an excellent doctor). I saw evidence after our discussion of her working to not take on too many new patients.
Things got more complicated.
My latest scans showed a spot with increased uptake on my rib, plus my already-lowered platelets dropped even lower and were not recovering. More calls, more slow response. At this point, I was becoming increasingly concerned with my safety. Lowered platelets that don’t recover between treatments make things dicey, but what appear to be allergic reactions to the treatment are even scarier (think of things going toward anaphylaxis). Quick response to serious concerns are key to patient safety.
That’s when I realized what was happening had nothing to do with patient loads.
After some detective work, I realized what was happening was that the clinic was extremely short staffed in terms of nurses and was also losing support staff due to burnout. Management had been promising to fix this nursing shortage for a long time, but this was a problem that was not being fixed. Because of my time with the clinic, I had seen nurse practitioners come and go (two nurse practitioners quit on the same day at one point and that is very telling of a management issue). This shortage of nurses means the doctors and nurses become overworked, and support staff burn out having to handle regular duties, along with increased numbers of frantic patient calls like mine.
I am a vocal self-advocate, and I was losing hope in this lost in the medical system experience. What was happening to other, less vocal patients?
I considered staying; these people saved my life and my spirit. But after another experience of asking for help and feeling lost yet again, I had to face the fact that this was something that was going to take a while to set right. What I needed right here, right now in my increasingly complicated medical situation, was a doctor and nurses who responded on a timely basis.
I made an appointment with a new oncologist at another clinic that had a nurse practitioner ratio of one nurse for every two doctors, and I have since moved to that new clinic due to the presence of those nurse practitioners, along with the fact of the new oncologist’s competence. The new oncologist remarked during our appointment that no place was perfect, and she was right.
The new clinic has its own issues, which I’m quickly discovering. But as long as I can reach a triage nurse, nurse practitioner, or doctor and get the help I need, the rest I can work around.
I’m still not clear why the previous cancer clinic has not been doing more to hire much-needed nurse practitioners. I do know that because they were not on staff, I was lost in a medical system. That added to fears for my safety, sadness over the loss of folks I had come to value and a dangerous loss of hope in an already challenging metastatic cancer situation.
So, I’m off on a new journey that has its own challenges, I’m sure.  The one thing I hope that is true, though, is that when stuff hits the fan, I’ll at least be able to get through to someone who can help.
Because that sense of “we’ve got your back” is one of the most important things for anyone dealing with a dangerous, life-threatening medical situation.

Originally published via Nancy's Point as Metastatic Monday Featured Point 9/17/2018.

Friday, October 20, 2017

The Pink Sisterhood

I attended a screening of a breast cancer documentary last night because, you know, it's breast cancer awareness month. I was there for the discussion after the film to offer a different perspective, because my breast cancer is Stage IV. 

Now I figured the audience would be mostly women (it was). But I did not expect the audience to be dressed in pink. All of them. Dressed in pink. Pink shirts. Pink socks. Pink sweaters. Pink purses. All of it pink. A sea of pink.  I'd never seen anything like it before. 

And considering how much pink was already going on in the room, I found it odd that the women in the room were clamoring for even more pink. "I have t-shirts!" the event organizer called across the room,  holding a bright pink t-shirt aloft, the word survivor emblazoned on the back. And the women surged forward to grab their pink reward. They were a pack of pink breast cancer sisterhood, a sorority you can only enter after enduring a horrifying and hellish hazing period. 

But I am not a member of the pink sisterhood. My cancer has spread. I will not be a survivor, and survivorship is a cornerstone of membership in the breast cancer sorority. The reality is that roughly 30% of the pink sisters in the room last night will join my sad sorority, the cancer coming back into a distant organ, taking the poor woman through a new and never-ending hazing routine.  But as of last night, the women in the room had all been through breast cancer, their treatment was done, they were moving on with their lives.  They were survivors. They were members of the pink survivor team.

I do not blame those women for loving pink, for holding on to the hope that the cancer will never return. I certainly wish I could be a member of their group. I hate the color pink, but I would have been happy to wear fuchsia to be a part of the crowd. It's just I never got to experience living in the world of "your cancer's gone, you can go about your life now." By the time I was first diagnosed, my breast cancer had already spread to my liver (HER2-positive cancer is an aggressive and fast-growing disease).  Any way you cut it, pink was never meant to be my color after all.

The one wish, though, is that people would quit assuming that, because I say I have breast cancer, I will automatically survive and insist to me I will survive as well. Not everyone survives, and it's a sad reminder of that fact when the person I'm speaking to insists otherwise. Everybody survives breast cancer is a line sold by clever marketing people who want us all to believe that cancer, if caught early, never comes back, so please, buy these pink things and we'll give a little of the money to awareness campaigns, and then we'll pocket the rest. Breast cancer can come back years after first diagnosis. And breast cancer can and still does kill an estimated 40,000 women and men in the US every year.

So do me a favor. Do not assume that just because my boobs are gone and I've had chemo, that I'm happy about it and moving on with my life.  I live in the world of cancer permanently. Cancer will most likely kill me, unless that proverbial bus hits me first.  Go ahead and wear your own pink. Just try not to rub the pink in my face as well.  This is hard enough already.

Tuesday, March 21, 2017

Still Here

Last week a right-to-die advocacy organization contacted me.  I am terminally ill (Stage IV breast cancer) and had testified before the District of Columbia Council two years prior in support of a physician assisted dying law in the District.  A Washington Post reporter had emailed the organization, hoping to use a quote from my testimony, and the reporter wanted to know if I was still alive and if still lived in Washington, DC;  in other words, would I be able to take advantage of assisted death legislation.

Now I understand the practicality of these questions.  In two years I could have easily moved and, considering the capricious nature of metastatic cancer, I could just have easily died.  Still, seeing someone ask about my continued existence in an email was jarring and, in the end, soul shaking.  Was I still alive?

My response was short and to the point.

"Yes, I am still alive.  Yes. I still live in Washington, DC."

The organization's representative seemed thrown by my response, and tried to back pedal on the question of my being alive. "Of course you're still alive," he replied.  After the email exchange, I went back to my work day.  I was fine. The impact of the exchange didn't fully hit me until that evening.  In the middle of cooking dinner with my husband I stated, "Someone asked me if I was still alive today."  And then I left the room, sat down on the couch, and began to sob.

No one had ever so directly asked me this question before.  I live knowing that my health could quickly change, I could be dead in weeks or months. But I also live pushing that thought away just so I can get through my every day. I've discovered that I cannot function if my mind is filled with the reality of my impending death.

Many people ask me about my health. Thank God it doesn't happen too often, because frankly, when someone asks me how my health is what they're really asking is, How bad is the cancer?  Where has it spread?  How long do you have to live?  What is interesting is that even though I have been asked this many times in the five years since my diagnosis, I am still shocked when it is asked.  As soon as the health question floats into the air, I know everything I need to know about the person asking. She does not see me, she sees cancer. To the questioner, I am merely a disease, not long for this world.  A short timer.  The questioner does not want to know about me, the disease is the focus.  If the person really cared about me, she would ask "How are you," the emphasis on the word you.  How are you, a living, breathing, feeling person?

And I still struggle with how to respond to the how's your health question. Often I redirect the conversation to the questioner's health.  How is your health?  How is your heart?  How is your blood pressure, that family history of stroke.  I am hoping to illustrate that we all have health issues, we all will die.  I am not special in dying.  I just know the most likely cause of my own death. Even this approach is apparently not clear enough.  I still get the health question.  I want people to stop asking about my health. I want them to ask about me.  I am not walking death. Perhaps I simply need to state this more directly, become a haranguing educator on how to speak to the diagnosed.  

But nope.  I've decided the next time I'm asked about my health, I will reply, "Why? Do you know something I don't."   Get an uncomfortable laugh. Make them feel guilty. Why not?  The strategy worked for my mother and her mother before her. I come from a long family tradition of making people shut the hell up through guilt.

But still, there is the continuing perception that I am dying.  My close friends do not make this mistake. They know, in the tradition of Valerie Harper who was diagnosed with metastatic lung cancer several years ago and is also still here, that I will live until I die.  Since my diagnosis, many people I know have died before me. The healthy 50-something man who died of a sudden, massive heart attack. The seemingly healthy 50-something woman who was outwardly perfectly fit but was really harboring Stage IV colon cancer which she would not get checked, and was dead a week after diagnosis.  The incredibly fit 40-something man who exercised and ate right, but was dead two weeks after they found the lung cancer.  The sweet, kind, fit man who apparently suffered from crippling depression that drove him to take his own life.  I have outlived them all, and yet, I have had the diagnosis, the "bad health" for longer.

The point is there is no way to tell who will live and who will die and when.  Outward signs of health do not mean an escape from death. It only means you get to pretend death is far, far down the road. After the above gentlemen died of a heart attack, I had a conversation with another woman with metastatic breast cancer. While we both acknowledged the sadness of the gentleman's early demise, we also expressed envy. "How lucky he was to die quickly and not know it was coming."  It's the knowing that is the challenge.  Unlike most people, I know death is coming and I know it could come at any time.  But also unlike most people, because I know it's coming, I vehemently appreciate every day I live past my supposed expiration date.  That sense of gratitude eluded me when I was able to pretend I was not dying. In dying, I ironically found life.

Meanwhile, here is my tip for checking to see if a terminally ill person is still alive.  Send the email or make the call, and when the person responds or picks up the phone, assume she is alive.  If you do ask the person if she is still alive after hearing her voice, do not be surprised if she then goes on to point out your impending death. Because, believe me, thinking about your death sure as heck ain't much fun, and you don't want to hear it.

Friday, December 30, 2016

Let's Pretend the Bride Does Not Have Cancer

In my time dealing with cancer, I've discovered that not only is cancer an illness, but it is often used as an identifier as well. After diagnosis, women are referred to as breast cancer survivors. If a woman is diagnosed with stage 4, metastatic breast cancer, she is referred to as terminal. It's as if the cancer becomes an integral part of a person's identity. We are no longer just wives, mothers, co-workers, daughters, sisters or nieces. We are "the niece with cancer," "the co-worker who is dying," "the sister who is a breast cancer survivor."

In the metastatic breast cancer community, women debate what to call themselves. They don't feel comfortable with the “survivor” label since that is so often associated with the pink world that you'll be okay and breast cancer is curable. It is not, especially for the 30 percent of us who will later move on to deadly stage 4. Knowing we won't survive it, many with metastatic cancer insist upon being called a metavivor, someone who is continuing on in spite of a stage 4 diagnosis.
For me though, as I've continued down this road of dealing with metastatic breast cancer, I've found that I never wanted to be a cancer survivor, a cancer thriver, a cancer metavivor or a cancer anything at all.

I am not a label. I refuse to live my life that way. I am Susan. I have brown hair, hazel eyes, a kind heart, a wicked sense of humor and I also happen to have metastatic breast cancer. Like diabetes, arthritis and heart disease, it is merely a medical condition I have, not a part of my name. I am not cancer Susan, dying Susan, or metastatic Susan. I am just Susan.

I understand where the tendency for labels comes from. Cancer is a nasty disease. The disease and its treatment tears people apart physically, causes tragic levels of pain and the associated treatment costs bankrupt many struggling to pay the resulting medical bills. Cancer is so looming in its destruction; people often see only the cancer rather than the person.   So-and-so has cancer? Everyone begins to talk about that person in hushed tones. “Oh, poor Ruby. She’s a goner.” The assumption and the association are easy to make.

Here's the deal though. I am getting married in July, and my cancer has nothing to do with my engagement. My fiancé, Jeff, was attracted to my humor and my spirit, not the cancer I happen to host. Jeff decided I was someone he wanted to spend his life with, so he asked me to marry him. I said yes. He knew about the cancer. He knows how metastatic cancer works. He asked me to marry him, not the cancer. So I am just like any bride. I want to celebrate this wonderful union with this incredible man who has chosen me and whom I have chosen back.

But still, the labels persist. From the aunt who congratulated me on my engagement and then immediately told me about an in-law of hers whose cancer is so bad he is stopping treatment, to the friend who told me that in spite of my stage 4 cancer, I get to celebrate milestones too. All of these responses wrap me and my wedding in cancer. It's as if all of my life has cancer, not just a part of my body.

This is not a cancer wedding. This is my wedding. So even if I hobble down the aisle, my chemo wig askew, dragging an IV pole, I want everyone, including myself, to pretend I don’t have cancer. Look past the IV pole and look at me, the bride. Look at me holding hands with my love, committing my life and my love to him. I am not a cancer bride. I am a bride named Susan. And on my wedding day I will eat cake, dance, hold my new husband and let him hold me, and celebrate. And I will thank God that I am alive.

Also published on CureToday

Hope In the Midst of Cancer Sadness

Courtesy of Jeff Salmore Photography
I got married in July. It was a sweet ceremony, in a small church, the guests gathered at tables surrounding the ceremony space. My husband's best friend said a few words during the ceremony, describing the growth of our love. It was a heartfelt speech, but I didn't realize until after the wedding, that he only knew my husband, not me. So he couldn't tell the story of how I came to love Jeff or my feelings about the day.

My diagnosis with cancer came in the middle of an already long streak of sadness. Three years prior to being diagnosed, my mother suffered a hemorrhagic stroke. The stroke left her brain destroyed, but luckily her advance directive was clear. As per her wishes, we took on the task of helping her die. This is something I never want to do again, but if someone I loved we're in a similar circumstance, I would help again. It was a painful, loving thing to do. My mother and I were very close, so after she died, I was left with the job of grieving her loss.

But apparently I was not done with loss. My older sister, like my mother, suffered from binge eating disorder, putting her at an incredibly unhealthy weight, which she worked hard to deny so that she could continue to partake in her food addiction. Six months after my mother’s death, my sister almost died due to that addiction. We all hoped that this close call would be the bottom she so desperately needed to hit in order to begin facing her addiction and make a start towards recovery. But that was not the path Melissa chose. She continued to binge eat, and in February 2010 Melissa passed away at age 51, leaving me to grieve yet another significant loss. And then, in January 2012, my own health became a serious issue, doctors discovering that metastatic breast cancer had covered my entire liver. I entered a grueling period of chemotherapy and surgery, along with constant, numbing fear of suffering, pain and death. The sadness continued.

In spite of all this sadness though, I decided to take a risk. Three years into my diagnosis I began to date. Because of the cancer, I did not know how long I would be alive. I only knew that I was stable for now, and I wanted to continue living. And living included dating. I entered dating only hoping to find a companion, someone with whom to pass an occasional evening. I did not expect to love the man sitting across from me. After Jeff and I began seeing each other, friends told me I looked happy. In dating, I took life day by day, partaking in what was in front of me, and I enjoyed my time with Jeff. I certainly hoped that Jeff would stay, but I had no expectations. I was, after all, someone with metastatic cancer. There were no guarantees in my future except a likely too-soon death. So when Jeff asked me to marry him, it was an unexpected joy. After so many years of unrelenting grief, it was a relief to finally receive some good news.

So what I felt on my wedding day was a sense of celebration of good news amidst the bad, a safe place in the middle of the storm. And this is what the best man did not know me well enough to say. For me, my wedding day was a day of sunshine in the darkness, a reprieve of the howling winds of grief. This day was a day unlike all others. It was a day of unmitigated joy. Now, looking back, I wish I had had the courage to ask someone to speak this truth for me, but I did not. So the only thing I can do is write my own wedding words, speak my own joy and tell my own story of unexpected love in spite of sadness of loss. Because, on that day, my wedding day, these words of renewed hope and returned growth after a scorching forest fire were the most important words of all.

Also published on CureToday