Medical Emergencies and the Single Girl

or How I Use Medical Identification Jewelry to Keep in Touch

When my mother suffered a hemorraghic stroke in August 2008, we could not find her living will for two days. Now my mom had watched her own father die a lingering death, his body tied to a hospital bed by tubes, IV’s and a catheter while he hung in a tenuous coma for over a month. Mom had sat by my grandfather’s hospital bed the entire time, watching her father fade as the medical staff moved constantly in and out of the room to tweak the dials delivering the medication that kept him in delicate balance between life and death.

As soon as my grandfather died, my mother made sure she had a living will, or advance directive, in place to make sure the same thing never happened to her. The thought of being trapped in a coma for the rest of her living days scared her so much, in fact, that she purchased a copy of the book Final Exit, and kept it close at hand so she could feel she had control over how she would die.

So not being able to find my mother’s living will, while she lay in a hospital bed, her brain destroyed by the hemorrhage, her body tied to tubes in the same way her father’s body had been, scared the heck out of me. Finally, we found the document, and my brother, my mother’s health Power of Attorney, flew in from Florida, and we sadly helped my mother die. According to her wishes.

I would not recommend the experience of helping a loved one die. It is a horribly sad experience. But I knew this was what my mother wanted in that situation. And I know it is what I want for myself if faced with the same thing. So I also have a living will.

The question became though, what if like my mom, I collapsed suddenly? I live alone, far away from family. What if I were to fall in the middle of the street, only strangers nearby to help? How would they know who to call? And what if my loved ones could not find my living will?

At the time I was friends with a woman who wore a medical alert bracelet. I began to look at wearing one myself. I discovered that medical alert identification companies often offer a service that links your medical ID to a living will/advance directive filed with their service. They’ll also keep a list of your emergency contacts, your doctors, and a list of current medications.

Morbid it may be, but I was thrilled. I paid the $35 a year membership to the MedicAlert Foundation, and got my own little medical identification bracelet. The humorous part of the membership was when a representative called me asking what medical condition I wanted engraved on the bracelet. “Well,” I said, “I have high cholesterol.” We both laughed. The sad thing was that only three years later, I would truly qualify for a medical identification bracelet with Stage IV breast cancer, a medical port, and blood thinners. I feel honored.

But the most important thing is that when I wear my medical identification bracelet, it gives me a feeling of safety and assurance. I know that if I were to suddenly lose consciousness, hopefully an unlikely event, medical personnel will be able to quickly find my emergency contacts, talk to my doctor, find my living will, and receive an up-to-date list of all my medications and conditions. I know that more than 95% of medical personnel check for medical ID jewelry. And with current medical information, hospital staff will be able to make better decisions in my care. What more can a single girl need?

Here’s the complication. I am a stylish gal. I wouldn’t be caught comatose wearing the dreary stainless steel drab of a typical medical identification bracelet. You know that I found sources for fabulous yet practical medical ID jewelry. Of course I did. The wonderful things is that all a good piece of medical alert jewelry needs to work as planned is a the Caduceus symbol, the phone number for the organization with my records, and my medical alert ID number. Stylish and safe. A single girl’s dream.

Where can you find this stylish jewelry? Well, let me tell you about a few sources. There are many other sources out there, so keep in mind that this is only a start.

Another great source of medical identification jewelry is the site Etsy.com, which is sort of like eBay for artists. There are many beautifully crafted and affordable pieces available through this site. Just search for “medical alert” or “medical identification”.

So get shopping, gang. Buy that beautiful piece of jewelry. Send in that medical information, contacts, and advance directive for easy retrieval. And then relax, enjoy, and go live your life. We’ll be here when you need us.

Susan, The Uppity Cancer Patient

Note from Kathi: this image links to a page where you can get the design on a teeshirt; the proceeds benefit METAvivor. And you can link to Susan’s blog at The Uppity Cancer Patient.

For further information about living wills and your individual state’s requirements, you can visit this link at the U.S. Living Will Registry. Information about advance directives, including the Power of Attorney for Healthcare, can be found here at NOLO.com.

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Ashley: In Her Own Words

Recently, Kathi pointed me to this blog to read Lorien’s story, about a young woman with breast cancer — a diagnosis complicated by breast feeding, a mother fighting like hell to stay around to raise the kids.

I hate this story.

In 2009, I heard it from Ashley in our oncologist’s treatment suite. She had just been diagnosed with Stage IV Inflammatory Breast Cancer at age 39, when her daughter was 6 and her son was 3. Her odds were dismal, but she lived out loud for two more years. One of her passions was educating people about this rare form of breast cancer, in hopes that no one would have to face a similar diagnosis. And thanks to the generous permission of her husband, I can help to carry on her passion, by offering here a few excerpts from her blog, Ashley: Warrior Mom.

Gratefully,
Katie

——————————————————————-
Early April – Opening Day, April 6th actually – I wake up with really bad back pain. I figured that it was related to sleeping funny the night before, one kid had slept on one side of me and the other on the other side and I couldn’t move. We walked all over downtown that day and it was all I could do, and this was after taking Tylenol or Motrin or something which may not seem like a big deal but I never was one to take much medication. It wasn’t better within a day or so and I then attributed it to picking up my children and working in the yard etc., all the things we attribute back pain to.

Around that same time, neither my Husband nor I remember when, I noticed some changes in my right breast. It may have been a week or two before the pain in my back but it wasn’t long. I thought I had a clogged milk duct, my son had been weaning. I knew how to handle those but I couldn’t get it to clear, the hard spot was getting bigger and my breast was getting painful to the touch, not fun when a child rolls into you in the middle of the night.

Then I lost my appetite. Came down to breakfast one morning and nothing, nothing, was appealing. I started to lose weight, had lost about 5 pounds and went to do the MS walk with my friend Trish on Saturday April 25. As we were walking my right shoulder got more and more sore. I actually was in tears and stopped at the ‘medics’ at the water stop. Nothing wrong, just shoulder pain. So that week I called my doctor. I hadn’t been in awhile and they could see me Tuesday May 5th. Cool. I tell the doctor I have these three wonky things going on and that is my limit so I need to figure it out. He checks me out, says “Let’s get a mammogram, a lot of times a breast infection can cause back pain and upset your stomach”, no sense of urgency so he wasn’t worried either.

If you or someone you love is diagnosed with a breast infection, that is probably all it is, BUT if there is not improvement after one round of antibiotics, insist they look further before agreeing to more. There are women who use up valuable time with this aggressive type of bc taking antibiotics that aren’t going to help. (emphasis added)
—-
So it is the morning of May 7th. I’m convinced I have a nasty breast infection and am heading…for a mammogram…and call my mom on the way.

Mom: “Where are you going?”

Ashley: “I have a mammogram at Good Sam”

“Why?”

“Looks like a breast infection.”

“Do you want me to come with you?”

“No, I’m fine, no big deal.” Boy was I wrong.

Go in for the mammogram, they decide to do an ultrasound (u/s). This is not surprising when there is something weird going on. At this point, the entire right side of my right breast is kind of hard, it is tender to the touch and the nipple is retracting. Evidently the doctor on Tuesday had seen a red rash as well. ALL of these are classic signs of IBC. [...T]he radiologist actually comes in to take a look at it herself with the wand. She looks at me and says “I’m concerned about something called inflammatory breast cancer. I want to do a biopsy right now and I want you to see a surgeon this afternoon.”

ARE YOU KIDDING ME! I looked at her like she had three heads, agreed to the biopsy and am thinking, “Okay, breast cancer…that sucks…but is pretty treatable…I’ll be fine” as I am trying to stay calm while they get ready to do the biopsy. They shoot anesthetic into my breast but evidently the mass kept it from circulating as well as it could so I am crushing this nurse’s hand while they take 5 samples of the mass in my breast and one of the skin (evidently the rash had gotten larger overnight…)

She explains that ibc is aggressive and nasty but I am young. Yipee. So I remain relatively calm through all this, she hands me the info about the surgeon she has scheduled me with in about 2 hours and tells me I should know tomorrow…I call my Husband. That’s when I fall apart. I only remember two parts of the conversation. Him asking “WHO had a biopsy?” and practically shouting “I DID! They are talking about cancer!”…he lets me freak out, gives me tissues, explains that I’ll be fine, it is just a breast infection and walks me to the car again…

Meet general surgeon. Very nice, explains that if it is cancer then his next step would be to put in a port since with inflammatory they do chemo first…I leave his office still in a daze.

I called my mom at some point but I couldn’t tell you when. I don’t think I told really anyone else that evening but I can’t really remember anything about that evening except sheer terror and lots of praying and pleading with God. I spent a fair amount of time holding and hugging my kids too.

Morning of the 8th. My daughter has a Mother’s Day program at school “Muffins with Mom”, she made me the most precious book, we ate muffins and had orange juice and then all head to the gymnatorium (who thought those up?) and I managed to get through the songs and outside before I fell apart…

2:50 – phone rings…it’s cancer.

“This isn’t happening.”
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Note from Katie: May 8 was a Friday. Her journey picks up on Monday, May 11 when she met with an oncologist.

News is still – inflammatory sucks – aggressive and nasty and will start with chemo on Thursday regardless of what the scans say. She keeps the scans that are scheduled and adds a port placement and MUGA scan… I leave still scared to death but feeling a little better because I feel like we are starting to fight it.

So my week is shaping up as…

• Monday – meet oncologist
• Tuesday- CT scan and bone scan
• Wednesday – port placement for easier admin of chemo and other drugs
• Thursday – start chemo
• Friday – MUGA scan (Heart because chemo can be tough on your heart)

So we realize the family is going to be around a lot and there is going to be a lot happening so it is time to tell my daughter. She is 6 1/2. So not fair that she should have to hear this. We sit her down on Monday night and tell her, at least the basics, Mommy has breast cancer, she’s going to take strong medicine that will make her lose her hair and will probably have surgery at some point to take off the breast that is sick. I take her to school the next day and fill in her teacher, the principal and the school counselor.

Have scans, praying the entire time. Have port placement, not too bad and while it was twilight sedation I’d bet I fell asleep given that I hadn’t really slept in days at that point. Go for chemo and to get scan results. They aren’t what we want. The bone scan shows mets to my right hip, two on my spine, one on my right shoulder and one on my skull. The CT shows mets to my right lung and my liver.

I also get scheduled for a brain scan the following Tuesday.

MUGA scan on Friday goes well – now to wait and see if it is in my brain. I go for my next chemo on Wednesday.

Brain mets terrify me.

Spend a tearful morning at church, praying that my brain is cancer free. Go for the brain scan, still praying. Go to get chemo and scan results the next day. MUGA was good, needed that mostly as a baseline. Brain scan results aren’t back quite yet. I tell my doctor that I can’t handle waiting – can she find out for me… she comes back 20 minutes later and says “Yes there is a brain, No there is no cancer in it” – the shelling has stopped as my husband phrases it.

——————————————————————-
From Katie: Please take time to read Ashley’s entire story. Her last blog post came out less than a month before she died on August 17, 2011. It is a genuine, human account of a brave and heartbreaking journey. We are fortunate that she left us with such an authentic gift. Thank you for taking the time to read this, and to spread the word about Inflammatory Breast Cancer.

With Gratitude,
Katie
Uneasy Pink

——————————————————————-
For further info and help with IBC, please visit the following links:
IBC Help
IBC Support Forum
IBC Research Foundation
IBC Treatment Clinic at M.D.Anderson

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363 Points Down

At age 35, Lori was diagnosed with Stage II breast cancer. She was a young wife and mother of a then three-year-old son. About ten months ago, ten years after her initial diagnosis, she was diagnosed with metastatic breast cancer. This is a post from her thoughtfully-written blog, Regrounding, about where she’s at now. With her gracious permission, we republish it here.

Breast cancer tumor marker image from MIT Spectrum.

I has been nearly ten months since every breast cancer patient’s worst nightmare became my reality.

I can still remember looking behind me at the evocative 5-year mark, as tamoxifen came to an end and there was nothing but life ahead of me. I had dodged a bullet, and while there were still pesky follow-up visits, each day was a step closer to being “cured.” My heart ached for those who were not likewise blessed to have life after cancer, and even as I inched my way further and further from treatment, I vowed to never take my good fortune for granted. That is, of course, all it was. It could just have easily been me. In fact, it just as easily became me.

Sometimes women who have put treatment for early stage disease behind them demand that I believe that they understand; as if their own experience is otherwise “less than” – less authentic, or less powerful, or less worthy. Of what I do not know. Of course their own cancer journey is a powerful, life-altering, life-appreciating experience. I have no need or desire to compete. I stand ready to celebrate the death of every cancer cell, be it in their body or my own. But a diagnosis of mets is different.

Ironically there are days when I’m not sure I have street cred amongst the MBC crowd either. My cancer remains asymptomatic, and predominately detectable by tumor marker. My scans are stable, and if anything we seem to be reversing the course. Having watched my tumor marker rise precipitously for two years, from below a normal of 42 to a peak of 491, I have been comforted by its persistent drop since I resumed treatment in August. I have no pain, no neuropathy, no alopecia, no nausea. I am weathering my treatment as smoothly as anyone might.

Too smoothly, perhaps. While it appears on the outside that everything is just fine, it doesn’t always feel that way on the inside. And yet the pressure to “count my blessings” and “be positive” is enormous. Most days being positive comes easily. I am optimistic and confident that I will beat this back. But every now and again the gravity of having metastatic disease washes over me, and I have to dig deep to find those blessings. Some days I just need to be angry and sad and frightened. And I need it to be okay with the people around me.

If surviving an early-stage breast cancer diagnosis is a brush with death, then living with metastatic breast cancer is a dance with it. There will never again be a cancer-free day (which is not to say that there ever were, but sometimes I could act like it). Instead of an annual scan, I am forced to face my fears every four weeks and to wonder at night what it is like to die of breast cancer. Trying to live every day as if it’s your last, with appreciation for the gift that it is, and the taste of its brevity is, on one hand exhausting, and on the other the most exquisite gift.

As my tumor marker inches down, from 491 to 128, I am grateful for each of those 363 points it has dropped, even if none of us really knows that they mean. Markers measure response to treatment, and clearly treatment is working. What happens when I arrive at “normal” I do not yet know. I’ll keep you posted…


For more information about tumor markers, you may visit the following links:
National Cancer Institute – Tumor Markers
American Society of Clinical Oncology’s Guidelines for Tumor Markers for Breast Cancer
~ Kathi

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My Education

Amy Durfee West was a practicing attorney for close to three decades until she found herself moved to change her life’s path. About a year ago, in the midst of pursuing this new path, she was diagnosed with Stage IV breast cancer. This is her story.

My Education

On May 20th, I’ll be graduating from Boston University School of Theology. I’m not going to wear any eye makeup because I know I’m going to cry. For one thing, I cry very easily. I cry at weddings. I cry at tear-jerker movies. I cry when I’m mad or sad. For another thing, a year ago I wasn’t even sure I’d still be alive at this point, much less graduating on schedule, because a year ago I tripped head first into the long, dark tunnel that is metastatic breast cancer. So the fact that I’m both still alive and graduating is a very big deal.

From 1980 until 2008 I practiced law in Denver, Colorado. I did corporate, business, and real estate transactional work. In 2002 I found myself laid off and unemployable because I didn’t have enough clients, so I opened up my own practice. That was the best part of my long legal career. I loved being directly responsible to clients and developing personal relationships with them. I really enjoyed being a counselor and advisor, not just a document drafter, and I found out I’m good at it. Putting the deals together is the fun, creative part. Attorneys I had known for many years referred me cases that didn’t fit their practices, or ones where they had conflicts of interest. Several good friends made a point of recommending me to represent the borrowers in deals where they represented the lenders. Existing clients would refer new clients; former clients would call again when they had new projects, and things just kept humming along.

After about five years I began to notice that my heart wasn’t really in it. I started doing more and more volunteer work, including public interest lobbying. In 2007 I found myself going to three Christian social justice conferences in the space of five months. On my way to the third one, a close friend said to me, “Have you considered the possibility that you’re being called to ministry?” I brushed it off, but one morning four months later I woke up convinced it was time to go to seminary. I had met people from Eastern University at all three of the conferences, so I found its website, clicked on the link to its seminary, and found out about the joint MBA/M.Div. With my background in real estate it seemed obvious. God wanted me to do some literal kingdom building. Soon after, I started working on a Master’s in Divinity at Palmer Theological Seminary.

In 2010 I moved to Boston from Philadelphia to continue my degree in a different program. I transferred to Boston University School of Theology because I realized I was being called to teach, and thought I should get my degree from a school that was more focused on the Academy than Palmer is. I had intended to get a joint M.Div./MBA in urban economic development, but it turns out I’m a scholar and a teacher. I want to teach, mentor, inspire and send out young Christian social change agents. About a year after I started at BU, I was diagnosed with Stage IV breast cancer.

I was utterly blindsided by the cancer. I didn’t think I was in any risk categories. It turns out being a woman over 50 who lives in North America is one of the most significant ones. All the “prevention” hype you read tends to gloss over the unavoidable factors, perhaps for obvious reasons. None of the risk factors — lifestyle, family history, whether you had children and at what age — holds a candle to just being a woman in an industrialized society. Nevertheless, I was right to be relatively unconcerned, because the other thing the hype does is exaggerate one’s sense of risk. It’s not true that “one in 8” women will get it. That figure represents the risk for invasive breast cancer over a woman’s lifetime, not the risk for each year she’s alive.

However, the third thing that the hype does is the worst thing — it gives the impression that breast cancer is “the good kind” of cancer and that early detection means it’s curable. Yes, some breast cancers are curable, but statistics estimate that up to 30% of people diagnosed with early stage breast cancer end up at Stage IV, which does not include the other 5% to 10% that are Stage IV at diagnosis. Everyone who dies from breast cancer dies at Stage IV, and the median survival rate is two to three years. While a very small percentage achieve permanent remission, the vast majority eventually succumb. Study after study fails to show any increased overall survival from routine screenings. It is true that the death rate from breast cancer has dropped a bit, but that is from better treatments, not from “finding it in time.” [Statistics for MBC] But I digress.

Based on the tumor size and lymph node involvement, my cancer looked like Stage II at first, but the hospital did a routine staging workup and eventually figured out that it had metastasized to my liver and lungs. Stage II involves surgery, chemo, and maybe radiation. Stage IV is an entirely different matter. It’s considered “incurable,” but they do go ahead and try to “manage” it. In terms of timing, the “bad mammogram,” the biopsies and the initial diagnosis knocked me for such a loop that I really couldn’t do much for the last month of the semester besides show up for class and choir. I took incompletes in two of my three classes. By the time I knew it was metastatic the semester was over.

Even though I cry easily, I rarely shed tears for myself. I didn’t cry about having cancer. At first I was stunned and numb. Then I was scared. But then I started trying to figure it out. I joined an online support group and an in-person group. I read books. I got advice from a friend who has been through breast cancer. I told my kids and other family members. Then I told friends, classmates, and others. Sometimes I’d be doing something I loved and realize I might never get to do it again, and I’d tear up, not from self-pity, or even anger, but just because I loved it so much. I started getting chemo every week. After about four weeks my hair started falling out.

I finished twelve weeks of chemo just as the fall semester began. I had a scan that showed the cancer receding, so I signed up for three classes. Honestly, one reason I did it was for the scholarship and student loan funding, and the health insurance. But I also wanted to keep working on my degree. Over the summer I finished the incomplete work from the spring semester, and even got straight As. In September I dove back in, with my head scarves and wigs, and with an oddly round face and belly from the steroids. I began taking a little white pill every day and going in every three weeks for an infusion of a monoclonal antibody that helps my body fight the cancer.

Cancer made me question whether I was really being called to ministry, or at least whether I understood my vocation correctly. Maybe it was to be a matter of dying well (whatever that means). Although I had planned all along to go on for the doctorate after getting my M.Div., that takes at least five years, and the odds that I would live long enough to get it did not seem very good. I thought maybe I should go back to Colorado and be appointed to pastor a church. I love school, but I thought wanting to stay in school was self-indulgent. I thought that especially if I don’t have much time left, perhaps I should focus on serving and ministering to others.

I began asking people who knew me what they thought I should do. They made some good points about how stressful pastoral ministry can be, and about what a good student I am. One teacher told me that the things I know and the way I think through issues and ideas, and talk about them, is of value to the other students. As a doctoral student I would be in a teaching ministry already. With that kind of feedback and encouragement, I decided to go ahead and apply. Another scan in early December showed that the cancer had become all but undetectable, with all the metastases gone and only a tiny bit of activity at the original tumor site. That seemed like reason to hope, and to move ahead.

I knew I wanted to study social ethics and that I didn’t want to go someplace I had never lived before. I was unable to find a doctoral program in social ethics in Philadelphia. (There might be one — it’s quite possible my search was not sufficiently thorough). I applied to the BU School of Theology, the BU Department of Religion and Theological Studies (part of the graduate school of arts and sciences), and the University of Denver/Iliff School of Theology (which jointly award a PhD in social ethics.) I was enthusiastically accepted by the BU School of Theology to work on a ThD in social ethics with a minor in evangelism, and the other two applications were turned down. I still had a choice, of course, between starting the doctoral program in 2012 and not doing it. I decided to do it.

I feel fine. I never got chemo brain. I have no lasting physical impairments. The neuropathy cleared up. I lost the extra weight that I gained. I can run like hell to catch the T and then catch my breath pretty soon after I sit down. I think the secret to beating cancer is to accept it and then look past it. I know I am going to die. I also know it is more likely than not that I will die from this disease. I can’t change that. If I let it keep me from living the life I think I’m being called to live, then cancer wins. If I keep living each day as fully, honestly and gratefully as I can, then life wins. I may not reach my next academic goal, but I made it this far, and I’ve got the next degree teed up. So I’ll just keep at it.

~ Amy Durfee West

You can visit Amy’s blog here: Amy Durfee West.

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