Sorry Business

       “The truth comes out of this hairbrush.” – Dula Nurruwuthun

If I could, I’d create a pole so high
it would pierce the sky, and still
would not be as tall
as you walked in this life.
I would summon truth
from my brush made of hair
to tell of your life’s essence;
the white of your pure intellect,
the green of your calming garden,
the red of your fierce heart.
It would whisper
the rose-gold of a Perth sunrise,
sigh the deep blue of absence
and shimmer like tears
to keep your spirit company
until the weary wood lies down,
the colors fade like daylight
to velvet night,
and I am left with
this sorriest of business.

-for Rachel Cheetham Moro, 1971-2012

On the islands north of Australia, the mourning period is known as sorry business. Some funerals include carved personal totems with designs applied by brushes made of human hair.
~ from an exhibit at the Seattle Art Museum

© 2016 Jackie Fox

An earlier version of this poem appeared in Issue 11 of Touch: The Journal of Healing

(Editor’s note: Rachel died four years ago today. Reposting this in honor of her indomitable spirit.)

What Survives of Us

Pam and me at my book launch party, September 2010

(Editor’s note: Watching “Being Mortal” on PBS last night inspired me to repost this June 2012 post about my friend Pam. She controlled the end of her story.)

“What will survive of us is love.” -Philip Larkin

Pam broke the news on December 9th, over dinner at our house for an early Christmas celebration. She had stopped all her cancer treatment because her oncologist, who cried breaking the news, told Pam there was nothing more they could do for her. She was calm when she told us how she could feel her body shutting down. My brother-in-law Jeff, his partner Eddie and I cried. Bruce, my husband, did not, but he got a huge lump in his throat.

And then Pam did something I will never forget. She talked about how grateful she was for the life she had and for everything she had been able to do in 40 years. She talked about what a wonderful vacation we had together in Napa in October and about how much fun we were going to have that weekend.

And we did have fun. We went to the Old Market the next day and watched the Dickens carolers. We had lunch in our favorite French bistro. We sipped chocolate martinis in our favorite bar. We toasted being there, in that moment. Our standard toast two years earlier was “Here’s to getting to.” We had started counting toasts in Napa with ridiculous numbers; toast 4,205 or 5,622. We kept that going now.

In the breast cancer Twitter community we talk about being fearless friends. I am so far from fearless. I was scared for Pam all the time, and so was Bruce. We were afraid of what might go wrong when we were traveling together or she was visiting. Jeff was driving her somewhere one day toward the end and she suddenly went “Oh! Oh!” and scared the daylights out of him, but she had seen some fast food drive through she wanted to stop at for iced tea or a shake or something. What allowed us to be there for her was her incredible strength and steadfast refusal to let that thief cancer rob her of her joy in life. If she was tough enough to handle it, so were we.

She never stopped being interested in life. She wanted to know everything about our lives. She wanted to hear about school and work and food and wine. Bruce and I spent the weekend with her in her Kansas City home in early March, a month before she died. She said if you want to come, you should probably come sooner than later.

She took us shopping and to lunches, to a speakeasy and dinner with her parents. We got pedicures and she brought champagne in her tote bag. She cooked. She drove–like a bat out of hell. She hugged me so hard when we left it was like being hugged by my cowgirl cousin, who throws hay bales. I could feel her spine. When we called to let her know we got back to Omaha, she was at her son’s baseball scrimmage, in spite of pain that had kept her on the couch. None of us will ever know what all that effort cost her. When the hospice nurse started coming to her house, she told Pam she wasn’t taking enough pain medication, but Pam had to do this her way. She put off the shrinking of her world as long as she could.

After she went to hospice, she was talking to my sister-in-law Anita about something Anita had made for dinner and said, “I want that recipe.” She knew she was never leaving the hospice; she was tough enough to make the choice to go there. You need to know this isn’t denial. This is insistence on being alive.

One of my favorite stories about Pam was from the night of my book launch two years ago. She bought a carrot cake at the restaurant where we had dinner because I mentioned I liked it. (She was like that. If you liked something, she remembered it and you ended up getting it as a gift.) We brought it home after the party and she set it on the kitchen counter. Jeff and Bruce and Eddie and I were all dithering–too late, too many calories, blah blah blah. Pam didn’t say a word. She pulled five forks out of the silverware drawer, came back to the cake and stabbed all the forks into it. We mauled that cake.

That was how Pam lived her life, and how she faced death. Straight on, no dithering, no excuses. If I can be half the woman she was when my time comes, it will be because she taught me how to live with joy and light and love, and how to face death with grace.

Here’s to you, Pam. Toast 10,373 and counting. I’ll raise my glass to you for as long as I live.

The Other “F” Word

I went to see my oncologist for my six-month checkup yesterday. All was routine, other than my blood pressure being 131 over something when it’s usually in the 115 range, even when I see my family doctor. No anxiety there.

When he asked what had changed in the last six months, I told him about the endoscopy I had in December, which turned out to be normal. But what prompted it is something anyone whose had cancer faces whether you want to admit it or not (and I usually don’t)–fear. I was having stomach discomfort that went beyond what over the counter drugs could handle. I finally got worried enough to get in touch with my family doctor. Her practice has a secure portal, so I was able to email her and spew out all my fears.

Ten years ago I wouldn’t have shared my fears at all, so that’s a kind of progress. But 10 years ago, I didn’t appreciate how your body can turn on you. Thanks to early-stage breast cancer I do, and it’s hard for my mind not to immediately go to the worst-case scenario. I shared every cancer scenario that kept me awake at 2 a.m. and scheduled an appointment. 

When I came in for the appointment, she was wonderful. I did a brief recap of why I was there. She listened, then said, “Let’s put all that stuff you’re worried about over here,” waving her hand, “and focus on the symptoms.” Based on my situation and history she prescribed a stomach acid drug and endoscopy. I want to stress that she didn’t order the test because I was scared, and I wouldn’t want her to. She ordered it because it was medically indicated. I’m not a big hugger but I asked for a hug after that because her rational but respectful approach was just what I needed. I feel blessed to have her as my doctor.  

I feel blessed to have my oncologist too. When I told him about sharing a wheelbarrow full of fears with my family doctor, he nodded and said, “That’s what happens when you have cancer.” Then he paused and smiled and said, “It doesn’t help to be a cancer doctor either.” I said no kidding.

It reminded me of the “No Fear’ brand of clothing that came into vogue because of motocross. A few years back I spotted a young guy wearing a shirt that said, “Some Fear.” I laughed then, but it’s even funnier now.

The #BCSM (breast cancer social media) community has discussed this residual fear on their great Monday night tweetchat. If you feel like you could use (or lend) some support and you’re comfortable with Twitter, it’s a great chat. You can also visit their website. And they’re not snobs; some things, like fear, are universal, and people with other kinds of cancer have been made welcome there.

Breast Cancer and Disability Benefits

(Editor’s note: This guest post is from Molly Clarke on behalf of the organization Social Security Disability Help. It is not affiliated with the Social Security Administration.) 

Breast cancer and its treatment effects can make it impossible to work. The resulting loss of income and medical insurance can cause a significant financial burden. If you find yourself facing these circumstances, you may be eligible to receive Social Security Disability (SSD) benefits.

The Social Security Administration (SSA) governs two programs that offer financial assistance to people who can no longer work due to an illness or disability.

Social Security Disability Insurance (SSDI) is funded by the FICA taxes that most workers pay into the system. Eligibility is based on an applicant’s work history and the amount of taxes they’ve paid throughout their career. The SSA assigns “work credits” to each quarter an individual works and pays taxes. See if you meet the work credit requirements for SSDI here.

Supplemental Security Income (SSI) is a needs-based program that provides financial assistance to disabled, elderly, or sick individuals who have very little income. Unlike SSDI, SSI is based on financial standing. It is a good option for people who may not have earned enough work credits to qualify for SSDI. Learn more about the financial requirements for SSI here. In some cases, individuals may qualify for both SSI and SSDI.

Breast Cancer Criteria

In addition to the technical requirements listed above, applicants must meet certain medical requirements. The most basic requirement is to meet the SSA’s definition of disability. Essentially this means that you must have a serious health condition that prevents you from working for at least a year.

Although breast cancer can be debilitating at any phase, the SSA has very stringent requirements to qualify for SSD with breast cancer. Unfortunately this can make it very difficult—but not impossible—to qualify with early stage breast cancer.

Typically, applicants’ conditions and symptoms are analyzed by the SSA in accordance with their official guide of disabling conditions known as the blue book. The blue book listing for individuals who have breast cancer requires that your cancer is a carcinoma that has advanced locally, including metastases in your breasts, chest wall, skin, and/or lymph nodes. You may also qualify if your cancer is recurrent and does not go into remission despite receiving appropriate treatment.

Requirements are stringent because cancers that meet these standards are expected to last at least 12 months—satisfying the SSA’s definition of disability. However, if you do not meet these specific requirements, you may still be able to qualify if you can provide medical proof that your cancer and cancer treatments are expected to last at least a year and keep you from working

If it has been determined that your breast cancer is inoperable, unresectable, or has distant metastases, you may qualify for compassionate allowance processing. This program allows individuals with particularly serious conditions to be approved for disability benefits in as little as 10 days. There is no separate application for the compassionate allowance program. The SSA will determine whether or not you qualify and will expedite your claim accordingly.

Starting the Application Process

The SSA requires that applicants provide documentation of their education, employment history, financial history, and most importantly their medical history. You should collect documentation of your diagnosis, laboratory tests, treatments, reaction to treatments, history of hospitalizations, and even personal notes from your doctor and submit them with your application.

It is important to have documents ready prior to beginning the application process so that there are no delays. Once you are ready to begin the application process, you can do so on the SSA’s website or in person at your local Social Security office. If you decide to complete your application in person, schedule an appointment in advance to avoid delays.

The SSD application process can be extremely difficult to navigate. If you find yourself overwhelmed or confused, it may be in your best interest to retain the services of a qualified disability attorney or advocate. He or she will have a thorough understanding of SSD benefits and will be able to guide you through the application process to ensure that you don’t make any mistakes.

Appealing a Denial

Many applications are denied due to lack of medical evidence or small technical errors. If your initial application is denied, do not panic. You are allowed to appeal this decision. It is important to remember that no matter how difficult it may be to be awarded disability benefits, these programs exist to help you. Do not give up. Once you are awarded benefits, you will be able to focus on your health instead of your finances.

How to Get Comfortable on Tweetchats

BCSMI’m writing this post in response to a plea for Twitter mentors from Jody Schoger, one of the moderators of the Breast Cancer Social Media (#bcsm) tweetchat. It takes place every Monday night at 9 p.m. Eastern time and has rapidly become one of the most popular tweetchats out there. Jody said there are quite a few lurkers out there who need some help getting started.

The first thing you should know is it’s common to feel intimidated by tweetchats and Twitter in general when you’re first getting started. I remember how scared I was the first time I attempted to join a conversation on Twitter. It’s like walking into a giant cocktail party where you don’t know anyone. I also remember how thrilled I was the first time someone I didn’t know started following me on Twitter. He’s a doctor who since deleted his account (at least that one–he could still be out there somewhere), but I will always remember how he made me feel welcome and would explain things like what YW means (you’re welcome). I gradually become comfortable out there and you will too.

The other thing you should know is that #bcsm is one of the fastest-paced chats out there. So if you’re thinking, Wow, I can’t keep up!, it’s not just you. I followed along with another popular healthcare tweetchat one night and it was positively sedate by comparison. #bcsm is definitely like drinking from a fire hose.

There are a couple of things you can do to keep up. One way is to use tweetchat. You can sign in with your Twitter account and it will scroll all the #bcsm tweets. You can set the refresh speed and you don’t have to enter the #bcsm hashtag with your tweet. Another way is to use tweetdeck and create a #bcsm column where only those tweets will show up. I typically use both because sometimes one or the other will cough up a hairball.

That’s the technology side if it, but how do you get over feeling shy? Start slow. Introduce yourself at the beginning of the chat. Mention why you’re here. If you’re feeling shy because it’s your first time on the forum, feel free to say that. If someone makes a comment you love, say so. !f you have a question, ask. If someone says something that reminds you of your own experience, share it. If you don’t agree, that’s okay too, just remember to be respectful. It’s a conversation just like the conversations you have offline (aside from the fire hose aspects).bcsm-team_0

Finally, remember, you are talking to people, like #bcsm’s moderators and hosts: From left, Dr. Deanna Attai (@DrAttai), a breast surgeon who helps #bcsm and the public at large make sense of technical medical issues and is a member of the American Society of Breast Surgeons. In the middle is three-time cancer survivor and moderator Alicia Staley (@stales), and on the right is writer/survivor/moderator Jody Schoger (@jodyms). They are three of the most welcoming people you could ever hope to chat with.

The topic varies every week and ranges from dealing with mets to what cancer does to relationships, to the “open mike night” scheduled for this coming Monday, March 18th. Please feel free to join in.

The Gift

angel devil bra not flippedIt showed up on Tuesday. When I got home from work a very large box was on the kitchen deck. I figured it had come to the wrong address but it had my name on it; then I saw it was from Pam’s husband and slowly started connecting the dots.

It was the angel-devil bra that Pam modeled in May 2011 at the ArtBra KC event. The people who won it at auction gave it to her, and she displayed it on a dress form in her bedroom. It showed up practically a year to the day after the last time we saw her.

After shedding a few tears and raising a glass of Pam’s favorite Pinot Noir in her honor, we gave the bra and dress form a place of honor in our closet. I sent Eddie a thank you email and he said he knew Pam would want me to have it. He also said that I would truly value, appreciate and enjoy it.

He was right.

Pam artbra cover

Sorry Business

       “The truth comes out of this hairbrush.” – Dula Nurruwuthun

If I could, I’d create a pole so high
it would pierce the sky, and still
would not be as tall
as you walked in this life.
I would summon truth
from my brush made of hair
to tell of your life’s essence;
the white of your pure intellect,
the green of your calming garden,
the red of your fierce heart.
It would whisper
the rose-gold of a Perth sunrise,
sigh the blue of deep absence
and my tribute would shimmer like tears
to keep your spirit company
until the weary wood lies down,
the colors fade like daylight
to velvet night,
and I am left with
this sorriest of business.

-for Rachel Cheetham Moro, 1971-2012

On the islands north of Australia, the mourning period is known as sorry business. Some funerals include carved personal totems with designs applied by brushes made of human hair.
~ from an exhibit at the Seattle Art Museum

© 2012 Jackie Fox

Published in Issue 11 of Touch: The Journal of Healing