Not the Last One on Line

April 13th, 2011 § 7 comments

It seems like you can’t rank anguish. You shouldn’t be able to “out-suffer” someone. How do you quantify misery?
And yet, somehow we do.
“My problems are nowhere near as bad as yours.”
“I feel terrible complaining to you about it when you are going through so much yourself.”

I hear these types of comments all the time.
I make these types of comments all the time.

Placing ourselves in a hierarchy of pain and suffering serves to ground us; no matter how bad our situation is, there’s comfort in knowing there’s always someone who has it worse. Like being on a really, really long line at the movies or at the check-in at the airport, as long as there is someone behind you, it somehow seems better.

Hospitals use a pain rating scale: “On a scale of 1 to 10, how bad is your pain?” I was very intrigued when my son Colin was in the hospital for a week with a ruptured appendix and they asked him to rate his pain. At the time he was 5 years old and didn’t understand what they wanted him to do. He didn’t understand the concept of comparing one level of pain to another: it hurt… that’s all he knew. He used a binary scale to assess his pain: did it hurt or not? But as adults we know better: pain is not a yes-or-no question. Rather, there can be levels, ranking, quantification, and comparisons.

These mental exercises are necessary to keep us going through hard times, no matter what type. Before I got cancer, cancer was a “go-to” negative reference point. I mean, how many times have you thought “I’ve got health problems, but at least it’s not cancer”?

I did that. A benign lump needs to come out? At least it’s not cancer. A mole needs to be removed? At least it’s not cancer. My son has a cyst in his spinal column? At least it’s not cancer.

Then one day it was cancer.
So what could I pacify myself with?
At least it’s not terminal.
At least they can remove the body parts it’s in.
At least I have tools to fight it.

Then there was the big one: at least it’s happening to me and not my child.

I have a few friends with children who have had different types of cancer. These men and women (and their children, of course) are tough and have my utmost respect. I have thought many times, “That is harder. At least that’s not me. I don’t know what I would do.” When my son Tristan was diagnosed with deformities in his neck I thought “at least it’s something physical. At least it’s not something wrong with his brain. At least it’s not something that is fatal.” It’s cold comfort though. It’s still pain. It’s still grief. It is still hard.

I have often said I hate becoming anyone’s negative reference point. “At least I’m not her” someone might think of me. I always thought that meant they pitied me. I didn’t want that. But now I realize that it is okay for people to be glad they haven’t walked in my shoes– in reality, that’s what I want. I don’t want anyone to be where I have been; I’d like to be the lightning rod that keeps others I know safe. But, if it gives comfort to anyone to know that at least for today, their problems are not as big as mine, I think that’s good.

Because actually, at least for today, I’m doing just fine. I had laughs, and warmth, and hugs, and a day without pain—and I know that there are many people out there who can’t say the same.

Today I’m not the last one on line.

Growing pains and psychological stretch marks

April 11th, 2011 § 5 comments

The months and years go by. Like all of you I mourn the quick passage of time. “Where did the fall/winter/year go?” I hear my friends asking.

Projects we hoped would be accomplished — tasks we hoped would be done — sit unfinished. Organizing photos, cleaning out a closet or a room, reading that book a friend recommended; many things went undone in the dark and cold months of winter.

Maybe there were emergencies, maybe there were health issues, maybe you just couldn’t get the energy together to accomplish everything you wanted.

Regardless the reason, there can be a bit of disappointment when a season ends.

Growth happens in fits and spurts, not with smooth, sliding grace.

With each phase comes
pain,
discomfort,
unease,
restlessness,
sleeplessness,
yearning.

At the time of my mastectomies the reconstructive surgeon placed tissue expanders in my chest. These were temporary bags of saline that would be slowly filled to stretch out my skin to make room for the silicone implants that would eventually take their place. Each week, like clockwork, I returned to my surgeon’s office. He accessed a port in each expander with a needle and added saline to each side. Each time after a “fill” my chest would feel tight. The skin wasn’t big enough for the volume inside, and it would react to the increased pressure by stretching. Until the skin could replicate there was achiness, tightness, a slight ripping or tearing feeling.

A similar sensation happened to me during my pregnancies. The growth happened fast; I got stretch marks. I had visible proof my skin just couldn’t keep up; the growth was too rapid, too harsh, too vigorous.

I often wonder if mothers and fathers get psychological stretch marks when we are asked to accommodate changes we’re not quite ready for.

What can we do? What options do we have? None. We must “go with the flow” and do the best we can. Our children grow and change whether we like it or not. We do them no favors by trying to protect them, coddle them, and keep them young.

We give them wings to fly when we give them tools to be
confident
and caring
and inquisitive
and trusting
individuals.

I am often moved to tears as I watch my children grow.

I sit in wonder at the succession of infancy, childhood, and adolescence.

I know that as a mother I lack many skills, but I also know that the words I have written in my blogs and essays will one day be a gift to them too.

Not a gift to the children that they are, but instead a gift to the adults that I am raising them to be.

Each August as they go back to school I marvel that another school year has passed and yet another is here.

No matter how you measure time it always goes too fast.

The growth happens too fast.
The growing pains hurt.
The stretch marks might be invisible, but they are surely there.

Writing in the margins of Dani Shapiro’s Devotion

April 9th, 2011 § 11 comments

I’m not the kind of person who reads books twice. My husband wears down the fibers in the covers of some of his books, corners frayed by his hands as he holds and bends the written pages. Me? I barely have enough time to read a book once. My attention span is short, my free time small. With three children and a house to take care of there just doesn’t seem to be time to do everything I want.

This morning I awoke knowing what I wanted to do. I wanted to re-read sections of Dani Shapiro‘s second memoir, Devotion. About twenty pages into it I realized I was literally itching to do something: write in the book. I hadn’t allowed myself to do that the first time. Lately I had felt that my books (especially ones written by people I knew in person or on Twitter, even moreso if signed by the author) should remain pristine. I have eschewed e-readers in every form for this very reason… typing notes in margins is not as satisfying as using colored ink to have my interactive conversation with the author. Sometimes exclamation points or “YES!” will interrupt the creamy expanse of the margin, but more often than that my graduate school training has led me to issue challenges to the author. Questions that start with “But what about…” or the challenging, “Does not take into account…” are what you will find in my books. As I try to process what the author says I imagine I am conversing with them. And, in fact, I am; writers write to start a conversation with the reader. If all the reader does is absorb without processing I think the author might be disappointed.

As I started Dani’s book this morning I realized the pristine condition of my hardcover was getting in my way. I needed to interact with it to really get the full benefit of her words. It seems the right thing to do. Only pages in to this second time through, I was already finding questions I want to ask her. I was, after all, a different person by my second reading. I was coming to the book with more experiences, different concerns and thoughts than I previously had. I came to the book with many of the same questions Dani herself was seeking to answer when she started writing. I realized that in the same way she had made sense of what happened to her by writing, I needed to do that too. Writing in the margins was my microcosm of that experience; without “talking back” I had missed a lot of the beauty and significance of her words.

I already feel myself digesting her words in a different way. The same way I cannot experience major events in my life without writing I realized this morning I cannot make sense of words without reacting. As my memory has declined and my mental capacities have suffered over the past few years I can’t rely on them to retain the memories of the sentences and paragraphs that have spoken to me. I need to wrestle with them, tease them out, formulate responses.

My book will be riddled with ink by the time I am done. But I realized today that is precisely as it should be. I think Dani would like that. I think it means I’m learning.

Their ignorance is my prize

April 7th, 2011 § 9 comments

I’m cranky, I’m sad, I’m frustrated.

I don’t want to explain how I feel to family members. I don’t want to have to.

I want to yell, “If you’d had cancer you would understand!” But I know their ignorance is my prize… the prize I get for the fact that some of the people I treasure most haven’t had cancer.

I’ve seen a comaraderie that comes with this disease.

We may have had different types of cancer, different treatments, different prognoses… but… we are tied together.

When I was diagnosed one of the first things I was struck by was how vulnerable I felt. I worried about my family, especially my (then) seven-month old son Tristan who had his own medical problems. “Who will fight for him?” I thought. “No one will love him the way I do. No one will be his advocate the way that I will. I have to do it. I have to be here for him. I have to do what it takes to stay alive.” That became my mantra.

But once introduced, the worry could not be abolished. It could be dampened, minimized, controlled. But it could not be removed.

Two days ago a high school classmate died of brain cancer. Today I got word that a woman I know is in intensive care after complications from leukemia.1

I ache for their families, for their children. I can’t explain the nuances of these feelings well. I have been here at the keyboard trying to find the words and repeatedly come up short.

And so, perhaps it is enough to say that I don’t always have the right words to convey what it is I am feeling.

But that doesn’t mean I feel it any less.

  1. I am saddened to report that Kellie died shortly after I wrote this post []

Cancer is not a gift

April 4th, 2011 § 23 comments

I have a friend who says that “cancer has been her gift.”
She says that it’s been the best thing that’s ever happened to her.

That perspective doesn’t suit me. Despite being optimistic and determined, I am a realist. I see the ugly warts.

I don’t think it’s the best thing that’s ever happened to me; in fact, I wouldn’t wish it on anyone.

A gift is something you want to share.
Something you want to give to someone else.
Something you say “Next time I need to give a special gift to show someone I care, this is what I want to give.”
Cancer is not that thing.

Language matters.
The words we use to describe illness, death, and emotion are important– we should choose them carefully.

Cancer is not a gift:
It’s what you get.
It’s what I got.
It’s a twist of fate.
A happenstance.
A piece of bad luck.

But once you’ve got it, you have to decide what you’re going to do with it.
You can’t give it away, so you might as well make the best of it.
Fortunately, some good comes with it too.
And one of the best parts is the people you will meet.

Just because you don’t think it’s the best thing,
or a good thing,
doesn’t mean you are a negative person
or a bad person
or any particular kind of person.

In fact, it may mean you are a realistic person.

It may mean you are having a bad day.
Or a good day.
Or just a day.

And you will have those days:
Good
Bad
High
Low
Carefree
Despondent
Manic
Depressed
Terrified
Numb
Grateful
Spiteful
Bewildering
Confused
Overwhelmed
Sleepwalking
Drained
Energized
Proud
Embarrassed
And everything in between.

The days are gifts.
You can celebrate the days.
You should celebrate the days.
But don’t celebrate the disease.
Don’t treat it like a prize.

You are the prize.
You are doing the work.
You get the credit.1

  1. April 29, 2009 []

Tips on what to do when your health insurance company denies your claim

March 29th, 2011 § 109 comments

I get asked a lot about health insurance claims. Having had many different diagnoses, surgeries, and procedures I have became all too familiar with interacting with insurance companies. In the last few years my diagnosis of breast cancer and the almost simultaneous diagnosis of our son Tristan with congenital spine and hand abnormalities has meant a level of paperwork, claims, and appeals I could never have imagined.

Navigating the maze of medical care and health insurance has become second nature to me. I think I’ve resisted writing this piece because initially I thought there wasn’t much to say. Having worked on this piece for weeks now, I realize the opposite is true: there is too much to say. Because each case is different it’s very hard to offer advice on what you, the reader, should do. But I’ve decided that’s the beauty of the blog format: I don’t have to cover all the bases. I don’t have to have all of the answers. I just need to do my best to help. And so today I’m starting to tackle this beast.

I’ve had many requests to write pieces about how to win against health insurance companies and many have suggested I go into this as a profession. I’m not sure about that one but I am definitely willing to share some of the insights I’ve learned throughout the past few years. I do think my upbringing in a medical household (my father was a cardiothoracic surgeon) helped familiarize me with medical terminology and how to correctly present a medical history.1 In addition to my tips you may be interested to read Wendell Potter’s recent advice in The New York Times: “A Health Insurance Insider Offers Words of Advice.”

Don’t take ‘no’ for an answer

The first piece of advice I have is simple: don’t take no for an answer. The fact your claim was denied is the starting point not the ending point. Insurance companies count on the fact that a large percentage of subscribers will receive a denial and either 1) forget about it, 2) intend to file an appeal but not follow through, or 3) incorrectly file the appeal paperwork (see Potter’s article, above). In any case, if they send you a claim denial and you don’t follow up for any reason, they win.

Always appeal

If you receive a rejection to a claim you feel you are entitled to always appeal. When I receive a claim denial I roll my eyes, roll up my sleeves, and say, “here we go again.” It’s what I expect, but it’s never the last word to me. Now, that is not to say that you always win– but it would take way more than one denial for me to accept that I’m not entitled to have a medical service covered. Persistence and determination are a large part of what it takes to win.

Physical (especially congenital) problems are easier to appeal than those related to developmental delays. I have little/no experience with appeals for diagnoses related solely to delays; while many of my general tips will still apply, more specific ideas will hopefully be available elsewhere online for those types of claims. I do know that when it comes to dealing with insurance companies those types of diagnoses are harder to quantify; this often leads to greater challenges with insurance appeals. In my experience, if the delays can be linked to anatomical problems, orthopedic issues, or diagnoses that can be validated with tests like MRIs or CTs, the case will be easier to justify.

Insurance companies must give you a reason whey they are denying a claim. Most often this reason is that 1) the treatment is experimental or investigational, 2) the treatment is not medically necessary, or 3) the treatment is not the standard of care.

In our case, initial denials have most often been because it wasn’t considered medically necessary.2

Show the progression of the situation and how options have been exhausted

I always try to base appeals on the phrases “medical necessity” and “medically necessary.” When you document a surgery or service that you or your family member needs:
Be clear how it is necessary to daily functioning.
Describe what will happen if what you are asking for doesn’t happen.
Be sure to tell what you have tried already, and what has failed.
Show how your diagnosis and treatment history has brought you to this place–how there is no other reasonable option to what you are asking for (or how the alternative is not preferable).
Be complete but don’t ramble.
Be sure to include diagnosis codes and treatment codes (your medical professional will provide these).

Doctors’ offices don’t always have the final say

I should point out that a doctor’s office may tell you that you will have to pay out-of-pocket. They may tell you that they have tried to get your service covered, it was denied and therefore this is the last word. It’s not. For example, my neurologist’s office tried to get my Botox injections covered. Their office appealed the first rejection. They were again denied. They told me that there was “nothing else they could do”; I would have to pay.

Undeterred, I asked for copies of my medical records. I called my insurance company and asked what I needed to do. Despite what the doctor’s office told me, I learned that patients often have a separate appeals process available to them. While physicians’ offices can often get services covered and can be very helpful in knowing what’s been a successful method of appeal in the past, they are not the only way to get services approved. In a case like this there is actually a financial disincentive for them to have insurance cover it; therefore, they may not be as aggressive as you will. What does that mean? If I had paid out of pocket they would have received almost three times the amount of money that they receive when compensated by my insurance company directly.

When the office tried to get the injections covered, the insurance company denied the request on the basis that this was an experimental treatment– not FDA-approved for this use. I provided medical history sheets from my medical file. I documented every drug I had take until that point to try to prevent migraines and the dates I took them. I explained the medical condition/situation that resulted when I had migraines. I told them how the neurologist felt the Botox might help me. I included the original letter he had written to the insurance company. I explained that if they didn’t cover this treatment a more expensive, more medically damaging situation would result– this would mean more claims and more expense for the company. In the case of the migraines I documented how much my “rescue medications” were costing them per month and how a reduction in those would easily pay for the Botox I was asking for. I showed through my history with the numerous failed attempts with other drugs that the situation had not improved and in fact the side effects from those drugs had been debilitating. I also showed the literature about preliminary success in clinical trials with Botox and my neurologist’s observations about its efficacy in others and the potential efficacy in my case. I explained I had no other choice, and while it might be not-yet FDA approved, Botox was actually on the verge of receiving such approval (I was proved right when it did receive approval for this purpose less than one year after my request).

Include all relevant information and send appeal within the required time period

This letter of appeal doesn’t need to be 3 pages long. In fact, even in my most complicated appeals I didn’t write more than a page or two at most (plus the inclusion of the supporting documents). Be sure to appeal/respond within the time frame they dictate. In the letter be sure to include:
your contact information, subscriber number, and the doctor/hospital/treatment facility information
the case reference number that they provide
all relevant diagnosis and procedure codes

Ask doctors and staff for assistance, documents

Do not be afraid to ask your doctor and his/her staff for help: what tactics have they found useful? If there are multiple codes that apply which ones are the best to use? Do they have any sample letters for appealing? What has their experience been with your particular health insurance company?

Use the rejection letter as the foundation for your appeal

Take the rejection letter you received and read it carefully. Don’t just react with “it says no” and throw it away. It is vital; in it, the company must tell you why they are rejecting your claim (usually one of those three reasons I mentioned at the outset). This is the key to your appeal. You must address this issue. They’re telling you the basis, you need to fight based on that. Be thorough but don’t get off track.

Another good example of persistence in appeals came with a corrective band we used for Tristan’s quite-misshapen head (diagnoses of plagiocephaly and brachiocephaly). The facility we used for the DOC band told us that insurance claims were most often denied for this service. Indeed, the first claim was denied; they said the “helmet” to correct his misshapen head was for cosmetic reasons only. I appealed. I explained that because of his neck abnormalities the head deformity was an inevitable result of having his head fixed in one place. Because he was unable to move his head properly he had this inevitable result of a physical abnormality. I ended up having two helmets approved for coverage.3 Had I accepted the facility’s statement that “insurance companies usually don’t pay for this” or my first rejection letter from the company, we would have had to pay in full for both helmets. I should point out that I’ve seen success getting this particular service covered even when the plagiocephaly was not due to a unique condition like Tristan’s when the subscriber persisted with the appeal process.

You can appeal more than just a denied claim

– A facility that isn’t usually in-network may actually be considered in-network for some diagnoses. For example, Memorial Sloan Kettering Hospital in New York City is a hospital that specializes in treatment of cancer. Though it isn’t normally included in coverage by some health plans, insurance companies will often allow oncology treatments there under the Centers of Excellence program. Through this policy, hospitals that specialize in certain conditions are treated as participating centers (in-network). So, if you wish to have medical care at a facility that specializes in a certain medical condition be sure to check whether they are included in this special program.

-Prescription drug plans can be adapted. This is a big one. What do I mean by this? Just because your prescription drug plan says it will only cover a certain number of pills doesnt mean that’s the last word. My prescription drug plan said only 9 pills of my expensive migraine medication would be covered each month. The problem? I frequently needed more than that number. I decided to investigate. I called my insurance company and the administrators of the prescription plan and asked how I could get that number increased because it was medically necessary for me to have more than that number. They said my doctor could call and make a request. He called and they agreed to cover 18 pills. I received a temporary increase to 18 pills a month for one year, renewable each year by going through the same process. That saves me up to $2880 a year.4

-Additionally, numbers of physical therapy/occupational therapy visits can be appealed. Our plan covers 30 PT visits for Tristan per year. He needs significantly more than that number. When the 30 are up, I write and document the medical necessity for him to receive more based on his anatomical defects. I state the skills he is getting with the visits and how they are necessary for his functioning. The physical therapist sometimes needs to include a letter and our pediatrician needs to write a prescription for the services.

Be organized. Take notes. Document everything

No matter what drug, service, surgery, or treatment you are appealing, you must be organized, take notes, and document everything. The key to my system is my medical binder. Have one for each family member. To see how to organize this essential tool, read my blogpost here.
Keep copies of your lab results, operative notes, and copies of all communication to/from your insurance company.
Be sure to have a fully documented medical history.
Save letters that were successful; if you need to repeat an appeal annually (like my migraine drugs and Tristan’s PT visits) then you will have a document that just needs minor tweaking.
Take notes on conversations (including dates and full name of the person you spoke with) at the company or doctor’s office. I learned that tip from my grandfather, a court stenographer for over 50 years: always keep track of the date, time, and name of the person you talked with. It may not be enough to prove your case, but if you can say “I spoke with (first and last name) on (date)” it lends credence to the fact that conversation took place.

Obviously, this post is not a comprehensive list of all types of conditions and how to win appeals for them. I know there are many readers who have had/will have experiences different from my own. I cannot tell you what will work for you; I can only tell you what has worked for me. I hope that by doing so and sharing some of these anecdotes you will learn something that you can apply in your own case. I realized while writing this piece over the past few weeks that there is so much to say about it. I’d like to consider this post an introduction to the topic; I will definitely revisit it again in the future.

  1. every adult should have a comprehensive medical history in their files. This should include info and dates of all hospitalizations, surgeries, diagnoses, medications. Also, you should list all close relatives and their age at time of death/cause of death []
  2. The notable exception was my petition last year to have injections of Botox for my migraine headaches covered. At that time the insurance company initially denied the claim because Botox was not FDA-approved for migraines and was therefore “experiemental.” The FDA has since approved this treatment. []
  3. They paid for 80%, we paid for 20% []
  4. With the Botox injections this number has decreased and I no longer require 18 per month []

What if

March 18th, 2011 § 11 comments

What if I hadn’t gone to the gynecologist on time for my 6 month post-partum visit?

What if, during the breast exam, when my left breast felt “different” (no lump, no real reason, just “different”) my doctor had dismissed it as post-nursing irregularity and told me to come back in 6 months for another exam?

What if, when I called to schedule the mammogram (only 18 months after a clear one) and they said it would be a few months for an appointment I had said, “Okay”?

What if I hadn’t called my doctor to tell her that’s how long it would take and ask if that was acceptable?

What if she’d said “yes”?

What if I hadn’t opted for a double  mastectomy?

What if I hadn’t gone for a second opinion on chemotherapy? What if I hadn’t gotten a second pathologist to review my slides?

What if that didn’t happen and I didn’t find out with that second look that I actually had invasive ductal carcinoma in one breast, in my lymph node, and dysplastic cells in the other breast?

What if I had decided not to do those things? Where would I be now?

What if I hadn’t been assertive, perceptive, inquisitive, impatient, and willing to do what it took to get answers?

I probably wouldn’t be alive. Or if I were, I’d be spending my time treating an advanced cancer.

Not blowing bubbles with Tristan today,
Not praising Colin for his schoolwork,
Not planning Paige’s sleepover for tomorrow.

I wouldn’t be able to enjoy the things I enjoyed today.

But I am here.
I was able to be with my family.
I was able to help others.
I am able to look to the future with hope.

And for that, I am happy.

The must-have binder: my key to being an organized patient (or caregiver)

March 16th, 2011 § 35 comments

Perhaps the most common question I get asked by email is, “Someone I know has been diagnosed with cancer. What can I do?” Today I offer one suggestion. I believe this would make a wonderful gift for someone who has just been diagnosed and is a necessity if you are the patient.

Being organized is one of the best ways to help yourself once you’ve been diagnosed. When you first hear the words, “You have cancer” your head starts to swim. Everything gets foggy, you have to keep convincing yourself it’s true.

But almost immediately decisions need to be made — decisions about doctors, treatments, and surgeries. Often these choices must be made under time constraints. You may be seeing many different doctors for consultations. Medical oncologists, surgical oncologists, radiation oncologists, recontructive surgeons, internists— there are many different voices that you may hear, and they may be conflicting. It’s hard to keep it all straight in the midst of the emotional news. Not only are you likely to be scared, but also you are suddenly thrust into a world with a whole new vocabulary. By the time you are done with it, you will feel you have mastered a second language.

You can help your care and treatment by being organized. Especially if you are juggling different specialists and different medical facilities, you must remember that the common factor in all of this is you. It’s your health. It’s your life. I believe it’s important to travel with a binder of information about your medical history and treatment, as well as notes and questions.

This binder will mean that all of your information about your cancer will be in one place. This will be your resource guide. I cannot tell you how many times physicians have asked about my binder and said when I was able to produce test results, pathology reports, or other information they needed, “I wish every patient had one of those.”

 

I suggest the following:

A heavy 3-ring binder

I think a 1.5″ binder is a good size to start. This size will allow you to easily access reports and pages and have room for the calendar. It will look big at first but you won’t believe how quickly you will fill it up.

Colored tab dividers

I like these to be erasable. I think 8 is the minimum number you will need. If you have a lot of specialists you will need more. The categories you think you will need at the outset may change. It’s easy to erase and reorganize them. Put the categories you will be accessing the most in the front so you aren’t always having to flip to the back. Once the binder is full it will make a difference.

Some starting categories:

  • schedules (dates of appointments you have had, when the next ones are due, and how often you need certain tests done)
  • test results/pathology (it’s very important to keep copies of MRI, CT, and pathology reports so that you correctly tell other doctors what your diagnosis is. For example, new patients often confuse “grade” with “stage” of cancer.)
  • insurance (keep copies of all correspondence, denial of claims, appeal letters, explanations of benefits)
  • articles and research (handouts, post-surgical information. Ask if there are any websites your doctor does approve of. My own oncologist said, “Do not read anything about cancer on the internet unless it comes from a source I’ve told you is okay. There’s a lot of misinformation out there.”) Keep your post-surgical instructions, any info given to you about aftercare.
  • radiation/chemo (keep records of exactly what you had done, number of sessions, dates, drug names, etc. I also asked how my dose was calculated so I knew exactly how much of each drug I received in total)
  • medications (drug names, dates you took them, dosage, side effects). I also keep a list of all of my current medications as a “note” in my iPhone. That way I can just copy it down and won’t forget anything on the list. You should always include any vitamins or supplements you take.
  • medical history (write out your own medical history and keep it handy so that when you fill out forms asking for the information you won’t forget anything. As part of it, include any relatives that had cancer. Write out what type it was, how old they were at death, and their cause of death. Also in this section include genetic test results, if relevant)

Loose leaf paper

Perfect for note-taking at appointments, jotting down questions you have for each doctor. You can file them in the approporiate category so when you arrive at a doctor your questions are all in one place.

Business card pages

These are one of my best ideas. At every doctor’s office, ask for a business card. Keep a card from every doctor you visit even if you ultimately decide not to return to them. If you have had any consultation or bloodwork there, you should have a card. That way, you will always have contact information when filling out forms at each doctor’s office. For hospitals, get cards from the radiology department and medical records department so if you need to contact them you will have it. Also, you want contact information for all pathology departments that have seen slides from any biopsy you have had. You may need to contact them to have your slides sent out for a second opinion.

This is also a good place to keep your appointment reminder cards.

CD holders

At CT, MRI or other imaging tests, ask them to burn a CD for your records. Hospitals are used to making copies for patients these days and often don’t charge for it. Keep one copy for yourself of each test that you do not give away. If you need a copy to bring to a physician, get an extra made, don’t give yours up. If you need to get it from medical records from the hospital, do that. You want to know you always have a copy of these images.

Keep a copy of most recent bloodwork (especially during chemo), operative notes from your surgeries (you usually have to ask for these), pathology reports, and radiology reports of interpretations of any test (MRI, CT, mammogram, etc.) you may have had. Pathology reports are vital.

Calendar

I suggest a 3-hole calendar to keep in your binder. This will serve not only to keep all of your appointments in one place but also allow you to put reminders of when you need to have follow-up visits. Sometimes doctor’s offices do not have their schedules set 3, 6, or 12 months in advance. You can put a reminder notice to yourself in the appropriate month to call ahead to check/schedule the appointment.

Similarly you can document when you had certain tests (mammograms, bone density, bloodwork) so you will have the date available. I usually keep a piece of lined paper in the “scheduling” section of my binder that lists by month and year every test/appointment that is due and also every test I’ve had and when I had it.

Sticky note tabs

These can be used to easily identify important papers that you will refer to often, including diagnosis and pathology. These stick on the side of the page and can be removed easily. As your binder fills up, they can be very helpful to identify your most recent bloodwork, for example.

Plastic folder sleeves

These are clear plastic sleeves that you access from the top. They can be useful for storing prescriptions or small notes that your doctor may give you. The sleeves make them easy to see/find and you won’t lose the small slips of paper. Also a good place to store any lab orders that might be given to you ahead of time.

 

The above suggestions are a good working start to being organized during your cancer treatment. If you want to do something for a friend who is newly diagnosed, go out and buy the supplies, organize the binder and give it to your friend. He or she will most likely appreciate being given a ready-made tool to use in the difficult days ahead.

I also believe a modified version is equally useful for diagnoses other than cancer. When our youngest son was born with defects in his spine and hands it took many specialists and lots of tests to get a correct diagnosis. Having all of his tests and papers in a binder like this was instrumental in keeping his care coordinated. In fact, at his first surgery at The Children’s Hospital of Pennsylvania they gave us a binder to assist in this process. I know some hospitals do this for newly diagnosed patients already. Maybe my tips will help you or a friend know how to better use the one you already have. You may not need all of these elements depending on the complexity of your case, but I hope you will find some of these suggestions useful.

 

Knit together

March 14th, 2011 § 10 comments

My parents came to visit on Saturday. They stayed for 24 hours, took the kids out for dinner that night and played lots of games of hide-and-go-seek. Nothing extraordinary, nothing particularly notable. It is in these ordinary moments that I find the most pleasure… seeing my parents and my children enjoying each other’s company.

My mother arrives like an environmentally conscious Santa Claus, toting a reusable grocery bag full of mysterious treasures for the kids. Many are newspaper clippings: suggestions for books or reviews of movies they might have seen. Often they are word or logic puzzles from their local paper; for me there are usually cartoons.  There’s usually something from the dollar store. Tristan is usually obsessed with whatever she brings while she is here; as soon as she leaves, so too does his interest in the item (hence the inherent beauty of the low price).

Another bag of my mother’s always contains her current knitting project. She knits in the car while my father drives. Tristan loves to wrap the house in the balls of yarn; he criss-crosses the furniture legs, counters, and walls until they are spiderwebbed. Paige has learned to knit and whenever Nana comes she enthusiastically picks up her project to join in while my mom knits. Mom knits wherever she goes. Watching Colin’s tennis lesson, sitting and listening to Paige play piano, watching Tristan ride his tricycle. She almost never looks down at her hands, something I was never able to master.

It was warm and sunny this weekend… a welcome break from the endless weeks of snow, ice, and cold we’ve had here in Connecticut. My mother sat out on the front step with Paige and they knit together while Colin shot baskets and Tristan rode his bike. I peered out the window from the kitchen at them sitting there. It made me sad and happy at the same time. I tweeted: “My mom is outside on front step teaching Paige advanced knitting techniques. I smile, I miss my MIL (mother-in-law), I feel lucky to see this moment.”

I can’t separate out the happiness of seeing my children with my mom with the sadness of wishing Barbara were here, too. Maybe that’s selfish. I know there are so many children who don’t have any grandparents that are alive, and mine still have three. But that is part of grief, I think… the effect it can have on happiness. It takes the purity away. I couldn’t just be happy to see the scene; I necessarily wished their other grandmother could have those moments.

I grabbed my phone and went outside. I wanted to capture the picture so mind won’t forget. Children often remember the quiet moments more than the big, fancy events. Paige will always associate knitting with my mom… she’s treasure the talks they had, side by side, as she knit and my mom helped her when she made a mistake. For Colin, having my dad watch him play tennis is one of the ways he likes to share with my parents. He’s proud, and knows my father is proud of him. He always gives a resounding “YES!” when I say Grandpa will be there to watch him play.

After my mom left Paige continued to knit. Shortly thereafter I knocked on her bedroom door. She answered, tears welling up in her eyes. She told me she had made a mistake. She had tried to correct it, but further wrecked the piece she was working on. She had ripped all of her work out. She would start over.

And so she did. And now, as I type, she’s sitting in a chair working diligently to recreate the work she destroyed. I know she’ll work until she goes to bed.

I know how quickly life can change.

For now, I revel in the glory of the ordinary, the everyday, the mundane.

 

Just Because

March 9th, 2011 § 13 comments

Just because you know someone who died from cancer doesn’t mean I will.

Just because you know someone who:
felt sick,
felt great,
felt tired,
felt strong,
looked great,
looked awful,
lost her hair,
kept her hair,
ate healthy,
ate crap,
took vitamins,
ignored medical advice,
got acupuncture,
believed in holistic medicine,
ate no soy,
ate no sugar,
never laughed,
never cried,
had surgery,
had radiation,
received chemotherapy,
got silicone implants,
got saline implants,
had a great attitude,
had a terrible attitude…

Just because you know someone who did
one of these things,
many of these things,
some of these things…
doesn’t mean it will work for me.
It doesn’t mean it will kill me.
It doesn’t mean it will make me live.

Just because it worked for someone else doesn’t mean it will work for me.
It doesn’t mean it won’t.
Or can’t.

It might.
It might not.

Just because you know someone who died from cancer doesn’t mean I will.

Cutie

March 9th, 2011 § 6 comments

When Tristan started to speak he didn’t call me “Mom.”
Or “Mama.”
Or anything like it.

Instead, he called me Cutie.

At first we laughed. And corrected him. But he was persistent: my name was Cutie. I had called him that often… he was mirroring back what he heard. It warmed my heart every time he said it; after a few times I stopped correcting him.

I could hear him in the house calling, “Where’s Cutie?” and it made me chuckle. In public, of course, it was priceless. “Where’d Cutie go? There she is! Cutie!”

One summer we hired a college student to babysit for the summer. She, too, got on the bandwagon. When referring to me, it was always Cutie.

While at the beach that year, we found a keychain that had “Cutie” on it. I bought it, and stuck it on my key fob.

A few months later when my car was broken into, the key ring was stolen. I have to admit, after the initial embarrassment of telling the young policeman that “Yes, I did have a distinctive keychain, and it was a flip flop that said ‘Cutie’ on it,” I was sad that this souvenir was gone.

Days later, the robber’s loot was found. I went to the police station to see if any of my belongings were there. My CD’s were gone. The sunglasses too. Almost nothing from any of the cars he’d taken things from had been recovered. But there, on the small folding table in the room at the police station was my keychain.

I was so glad to have it back. Somehow it was a really important trinket to me. By the time it was recovered Tristan was already starting to call me “Mommy.”

Interestingly, when he sees photos of us together from those years, including every single one from the photo session in black and white, he says, “There’s Cutie!”

I guess those years were as important to him as they were to me.

Written 4.28.2010

Interview on Jo Frost website

March 8th, 2011 § 0 comments

Today I am sharing a link to an interview I gave on Jo Frost’s website that went live today (she was the original Supernanny). It talks about blogging and tweeting as a mom. To read the piece go here or read the text below:

Tell me a little about what compelled you to start writing your blog

Originally I started writing my blog after I completed surgeries and chemotherapy for breast cancer. I posted a few pieces on my Facebook page and when some of my FB friends started asking if they could share them with their own friends and family I decided to start a website so there would be public access to them. At first I wrote about cancer, but I then began writing about grief and loss when my beloved mother-in-law was killed in a car crash in 2009. Eventually I began writing pieces about one of our children’s physical problems.

How you incorporate writing a bit about your children (was it something you were hesitant to do at first or did it feel natural?)

I didn’t originally write about my children. While some of my original pieces were about talking to children about cancer and death, it wasn’t until my mother-in-law died that I began to write specifically about my children and their grief reactions. I was struggling with my own sense of loss and I felt that expressing my family’s reaction to this tragedy would resonate not only with our own friends and family, but also perhaps with other readers. Eventually I began to write about our son Tristan who was born with physical abnormalities in his hands and spine. I think I initially felt very protective of him and didn’t want to write about the things which made/make him different. Ultimately I wanted to share his story because I felt his resilience was representative of the determination I had in dealing with my cancer. I also wanted to use it to share the philanthropic work of Shriners Hospital where he receives treatment and has had surgery.

Has writing about your experiences given you a different perspective on them?

I didn’t write about cancer when I was going through the actual surgeries and treatment. It was only later that I could look back on those experiences and reflect on them in a more coherent and thoughtful way. Because I was in the habit of writing already when my mother-in-law died, it was a natural way to document our feelings. I am glad that I have writings for my children to show in print how we dealt with this loss. My youngest child was three years old when she died; this will be one way we will teach him about her warmth, love, and lasting legacy in our family. When I read the blogposts I made in the days and weeks after her death, I am instantly transported to the world of grief. Readers connected with the mutual experience of losing a loved one, especially a death so sudden.

How would you recommend someone gets started blogging?

One cautionary piece of advice I have to parents who want to start to blog is to be very careful about what you say about your family and your children. Children are constant sources of happiness, frustration, and amusement in different combinations at any given time. However, children also grow up to be adults and may not necessarily appreciate stories about their daily triumphs and defeats shared in public. I always make sure to ask myself whether what I am writing is something my children could potentially be embarrassed about. I don’t say anything about them that would be upsetting to them as they grow older.

I think that blogging can be done well, but also can be done poorly. Blogging is a more informal method of writing but I don’t think that should translate to long ramblings of internal monologue. I think the best blogging is done with short posts meant to convey a particular thought or idea. If that means you have something to say every day, so be it. However, I don’t think you do your readers any favors by writing every day if those posts aren’t well-written or coherent. My attitude is that I want readers to be excited when they see there is a new post.

I only write when I am moved to; I only write when I feel I have something to say. I do not work on a schedule and I don’t publish a post unless I feel it’s saying something that is worth the reader’s time.

 

A step

March 6th, 2011 § 0 comments

Written September 19, 2009

I put makeup on for the first time in days.
I don’t know why.
I know the tears will wash it away.
But it’s a step.

Today, with complex fractures still unset in his right leg,
My father-in-law got out of bed and hopped with a walker.
I don’t quite know how.
But that’s the kind of guy he is.
He will have more surgeries on Monday.
He’s going to have at least twelve weeks without weight-bearing.
His wrist is set, with a plate.
His knee fracture will get repaired on Monday, too.
He’ll need months of physical therapy.
But it’s a step.

Colin, age 7, was just sitting at the kitchen table.
He had a plastic bone-shaped toy and
Had placed a piece of paper inside.
I asked what it said.
“Grandma 2009” he said.
And he wrapped Scotch tape around and around the bone to make
Sure the sides didn’t come apart.
“It’s like a memory box.”
“Oh,” I said, trying to hold back the tears.
“I think that’s nice.”

Paige is making a “Get Well Soon” card for Clarke to take to his
Father tomorrow when he goes to see him.
I am sitting in the other room and the thought of it
Brings me to tears.
I’m almost scared to go and look at it.
I just know it’s going to be so special.
So wonderful.
So filled with love
and innocence
and childish adoration
that it will be happy and sad
all wrapped up in one.
It will be painful for him to read I bet.

Being half of “Grandma and Pops”
is going to be like limping along…

But
I keep
reminding myself:
even
a limp
is a step.

Just a sandwich

March 6th, 2011 § 0 comments

Written September 18, 2009

I had a lot of breakdowns today.
At Starbucks talking to my friend Brenda.
In my car.
Talking to the director at nursery school.
The most embarrassing?
At the deli counter.
Looking at tuna salad.
The sight of tuna salad made me cry.

Two weeks ago I asked for a small container of tuna salad.
The way I always did when my in-laws came to visit.
Tuna salad from Palmer’s Market.
It was my mother-in-law’s favorite.
Nineteen days ago she sat at my kitchen table.
Twenty days ago I asked for tuna salad.
I just want to ask for tuna salad again.
I just want to say to my favorite deli counter man,
“My mother-in-law is coming to visit,
So I need to get more tuna salad…
You know how much she loves it!”
I just want to say those words.
I just want to make her a tuna sandwich.
That’s all.
Just a little thing really.
Just a sandwich.
Is that too much to ask?

Does that truck driver know that?
That I just want to share a sandwich with my mother-in-law?
I just want to hug her,
Hear her voice,
The way she liltingly said my name when I answered the phone.
The way she said “hello” in a special
Sing-songy way when I called her.
I think of the cotton nightgowns she loved so much.
The way she hated the last haircut she got in Jackson Hole.
How she wondered if they were still wearing linen in
Connecticut in August and if she could wear a linen blazer for
David and Bronwen’s wedding.
How she loved the note paper I got her for her birthday last year.
How she played Webkinz games on the computer
Just to be able to have something to talk to the grandkids about.
How she was jealous I got to hold Baby Owen the day after
He was born this week.
How she was making plans to come and see him.

Does that truck driver know that?
Does he know she had a brand new grandson two days old that
She didn’t get to hold?
Does he know he killed her on her son David’s birthday?
Does he know he killed the mother of six children?
Nine grandchildren?
Many more to come?
Does he?

I bet not.

I haven’t been able to eat more than a few bites since Barbara was killed.
I wonder if the truck driver has.
I wonder what he’s having for dinner in jail.
I wonder if he’s going to have tuna salad.
Because right now,
When I think of it,
All I can do is cry.

Children are different

March 6th, 2011 § 0 comments

Written September 18, 2009

Children are different.
From adults.
From each other.

I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”

I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.

But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in the Komen Race for the Cure with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.

Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.

If it is all of those things for me,
It can only be all of those things and more
To my children.

The Box

March 6th, 2011 § 4 comments

Written September 17, 2009

She went up to bed tonight,
Still pink-eyed and shaky.
Finally calmed enough to hopefully get some rest.
And as she walked into her room,
Somehow,
From beneath her bed,
The bright kaleidoscope patterned paper
Caught her eye.

I heard the sobs,
The wails,
The primal,
yearning,
cry.

“My birthday present.
From Grandma.
The one she gave me early.”
She stood pointing at it,
Gaze averted,
Like a child pointing at a dead
Animal in the middle of the road.

Together we looked.
And then all at once it hit me.
I knew what she was talking about.

Two weeks ago,
When my in-laws were visiting,
Paige’s grandmother had given her a wrapped box
And said,
“This is for your birthday.
Put it somewhere safe.
Don’t open it until October 28th.
I know it’s something you’ll like,
But you have to wait until then,
Okay?”

And so,
Because that’s the kind of 10-year old she is,
Paige didn’t peek,
Or lift the corner of the paper,
Or ask her brother what was in it.

Instead,
She carefully put it under her bed
To wait until October.

We had no way of knowing we’d never see Grandma
Again.
No way of knowing that was the last present that would be
Bought.
No way of knowing that a truck which had no business
Trying to pass anyone,
Much less several vehicles at once,
Would slam head-on into my in-laws’ car and kill our
Loved one.

Tonight,
The very sight of the box,
And the thought of its giver,
Brought her to tears,
Racked her with sobs,
Riddled her with grief,
Filled her with anger,
And sadness,
And loss,
And pain,
And confusion,
And did the very same
To me.

Barbara, I miss you

March 6th, 2011 § 1 comment

written September 17, 2009

I didn’t even recognize his voice when
I answered the phone last night.
It was my husband.
And through the sobs
He told me there had been an accident.
A car crash.
His parents.
Driving from their home in Jackson Hole
To their home in Scottsdale.
A truck had tried to pass some other vehicles
Around a slight bend.
The truck only got alongside an oversized load
when they collided,
at highway speed,
Head on.
In their lane.
The passenger side took the impact.
My beloved mother-in-law,
Barbara,
Killed instantly.

Mother to six,
Grandmother to nine,
Including newest grandson Owen born only two days ago.
Truly beloved woman.
We all grieve her loss.
We ache.
We are stunned.

Clarke’s father, airlifted to Salt Lake City.
Awaits surgeries for his injuries.
Already surrounded by relatives.
More scramble and scurry to be at his side.

We cry and mourn and try to make sense.
There is none to be made.
No reason,
No explanation.

Or maybe there is:
A stupid decision
By a stupid driver.

A moment’s impatience
Let to a
A split second acceleration
But a miscalculation
Let to a
Fatality.

Problem?
Wrong person died.
Wrong person paid the price.

Don’t tell me any logic.
Don’t tell me any cause.
Don’t tell me any plan.
Don’t tell me she’s in a better place.
Don’t tell me she’s looking down on me.
Don’t tell me anything good.
Don’t tell me anything about anything.

Right now
All I feel is pain.
All I know is hurt.

And now?
Now we have to tell our children.
Grandma’s dead.

Barbara, always in my heart

March 6th, 2011 § 0 comments

I’m going to be bringing over many of the posts I made when Barbara Smith Adams died on September 16, 2009. I find myself crying reading my words again… reliving those confusing, tragic, raw feelings that I had when I first got the news. I want to have those posts here on the new site; eventually the old website will be taken down. These pieces are some of the ones I am most proud of. Perhaps that sounds odd to say about writing that came from grief. However, to me they are a documentation of my love for a woman I was privileged to call my mother-in-law. I had nineteen years of knowing her, and they weren’t enough.

Every day something makes me think of her.
It might be the necklace I wear that was hers.
It might be my daughter’s round face which looks so much like Barbara’s.
A milestone for Tristan,
a family gathering,
any holiday,
my spring garden,
a pretty set of linens,
a family vacation,
Colin’s essay about making snow ice cream with her…
it’s anything.
I think of her all the time,
and I cry.

The strangest thing someone said to me about cancer was…

February 23rd, 2011 § 68 comments

When you (or a family member) are diagnosed with cancer people say a lot of insensitive things. It may be intentional or it may be just because they are caught off-guard and don’t know what to say to you. They ask bizarre questions, and often do bizarre things.

Sometimes you laugh.

Sometimes you just shake your head.

Sometimes you get angry.

But rarely do you forget.

So, today’s question is: what are the weirdest/craziest/most bizarre/most insensitive things people said to you/did to you while you or a family member or friend were going through treatment for cancer? Or died from it?

I have a few notable ones, but I’ll start with just one to kick things off. Someone asked me, “Is cancer what’s going to kill you? I mean, could you die from something else?”

 

#mondaypleads: my weekly nagging to keep you healthy

February 22nd, 2011 § 9 comments

I’m not really sure when I started #mondaypleads… I think it was about a year ago. On Twitter (@adamslisa), I got in the habit of nagging folks to go to doctors’ appointments. It started with mammograms. But soon I was sending out tweets gently nagging folks to take care of themselves and their families with a list of things I thought they should be doing. I had noticed that people were good at taking care of their children and their pets, but when it came to themselves– not so much.

At that time I had also become involved with a startup meme called #fridayreads. Now, I guess at this point I should assume that some of you are already wondering why I am writing with the number sign and why there were no spaces between those words. And what the heck is a meme? (that’s pronounced “meem” not “meemee” by the way)

For those who aren’t familiar with Twitter, here’s a brief explanation of hashtags. For a wonderful and humorous lengthier explanation of hashtags, please read Susan Orlean’s piece in her The New Yorker blog entitled “Hash”.1 The hashtag is that number sign (#), and one of the uses of hashtags is as a search tool. You can include a hashtagged term in your tweet (a tweet is a message of 140 characters) so that others can easily search for it. So you could hashtag #cancer or #snowpocalypse or #Egypt and then anyone with an interest in those topics could search for them and read tweets related to those things.

Now, one of the cool things about Twitter is that you can create a term; that is, you can make up a hashtag that will represent your idea. That’s a meme: a concept that spreads througout the internet. So… when my friend Bethanne Patrick (@thebookmaven) of The Book Studio wanted to start a meme to celeberate reading and have people share the book that they were reading with the Twitterverse each week, she started #fridayreads. Now with over 6,000 participants, the #Fridayreads team (through Twitter, an iPhone app and Facebook page) shares one of the things we love most: books.

Once I was involved with #fridayreads I wanted to create a meme to capture the nagging that I was doing and decided Monday was the day to do it. To try to be catchy, I created one to rhyme with #fridayreads: #mondaypleads. (By the way, I also created the #dailynag, a daily reminder for people to take their medications and vitamins. If you follow me on Twitter, you get a reminder each day.)

#mondaypleads has become what I consider to be an enormous success. I have received numerous messages from my followers that they appreciate the nagging, the gentle nudge it often takes to just do something you already know you should be doing. They tell me when they made the appointments, they tell me when they are going, they tell me how they went. It makes me feel good to know that people are listening, and doing.

I’ve even had a few cases where some of my 2000 followers didn’t know they should be going for some of these routine visits. One man read a tweet I made during #mondaypleads about going to the dermatologist for a skin check. He sent me an email: “I am in my 60s and have been a sailor for much of my life. Was there something I am supposed to be doing to monitor my skin?” I told him he should go to the dermatologist for a skin check to look for any suspicious moles and document the ones he has. He made the appointment. He went… and found he had two moles that were on their way to becoming malignant. They were removed before things got more serious. That’s exactly what you want: find things out while you can still deal with them relatively easily.

So… now you know the history. Now, on to the list.

Here’s what I do at home to organize my list: I have a binder of my medical records and reports with a piece of paper in it. The paper lists all of the doctors and specialists and tests I have had/need. I have the date and place that it was last performed and when I need a follow-up  (6 months, a year, every 5 years, etc.) Every time I have a test, procedure, follow-up or appointment, I note it in this section. That way I never have to wonder “When was my last MRI and when am I due for another?” or “When did that doctor say I was supposed to come back?” If you have lots of tests, it’s a great way to keep track of what you had and where. If you only have a few appointments it’s easy to keep track of them if you keep them in a file or an iPhone note.

By the way, one of the best things you can do if you take a lot of daily medications is to put that list in an iPhone note (or similar memo). I have a note called daily medications that I update each time my dosage or cocktail changes. That way, when you go to a new doctor or are asked to update your medication list it’s easy to recreate– you just open this note on your phone and copy it. This has been an easy and useful tool for me, especially during the months when certain medications were changing. It’s also handy that a family member can easily access this information in case of an accident or emergency.

Here is a basic list of what I think people should be doing for themselves. Depending on your medical conditions you will need more than this. I’m not a doctor, these are just some suggestions of things I think people should be doing (at a minimum) to keep up to date.

— (For women) mammograms, PAP smears, and annual gynecological exams. Discuss the frequency of these with your doctors, based on your age and medical/family history.

—Dental visits every 6 months.

—Annual physical/internist visit, including vaccine boosters. Ask about tetanus and pertussis boosters; I needed those recently. If you are over the age of 50 ask your doctor about the shingles vacccine. May need to monitor kidney and liver function, blood pressure, and cholesterol. Men should have PSA screenings once they reach a certain age. Discuss the timing with your doctor. Here is a recent article about the guidelines for adult immunizations. There is a PDF for viewing the list in chart form by age.

—Depending on your age you may need a bone density test, especially if you are a post-menopausal woman, went through menopause at an early age, or have a history of breast cancer. Certain drugs and treatments may affect your bone strength. Talk to your oncologist or internist.

—Annual skin check at the dermatologist to document and monitor moles

—Annual eye exam

—Depending on your particular medical conditions, endocrinology visits to monitor bloodwork including thyroid and blood sugar issues, especially if you have weight issues.

—Colonoscopy. Check with your doctor when to start doing these; it will vary based on family history. No one wants to talk about them but they really are not bad, folks. Find any problems early and your outcome will be better. I’ve had two already and so I’m not telling you to do something I haven’t done.

—Make sure your will and end of life directive are up to date. No one wants to think about dying but knowing your wishes will be carried out can be a relief. Make sure someone knows where these papers are and a copy is accessible in case of emergency. Also, adequate life insurance is a must… and best arranged while you are still young and healthy.

— Finally, here is information from Yale on becoming an organ donor. You could save a life by becoming one. Please donate blood, platelets, and get tested with Bethematch.com to be part of the bone marrow registry.

Again, these are the basics. It takes a lot to keep on top of your health. There is no better investment you can make than in yourself. I hope this helps!

p.s. If you have a chronic medical condition have been recently diagnosed, or are a caregiver, my blogpost about organizing your medical records, test, and papers may be helpful. Go here to read “The Must-have Binder: my key to being an organized patient or caregiver.”

  1. Susan’s Twitter handle is @susanorlean []

Tristan’s Valentine, part 2

February 14th, 2011 § 13 comments

Today I’m doing a follow-up to a piece I wrote last year. At Tristan’s preschool Valentine’s Day celebration last year he received loads of Valentines; one by his friend Bennett was beautifully written. At this time last year Tristan hadn’t had his tendon transfer surgery yet (you can read more about that here). He wouldn’t hold a pencil, had never colored or played with Play-Doh. He’d never written his name. I longed for the day that would happen, and in that way it usually does, I couldn’t imagine a future where he would write. It often seems when you’re in the worst of a situation, try as you might, you can’t picture a way out, or see that things will ever change. But I had hope, and belief in the surgeon who felt that the 3-pronged approach to making Tristan’s hand work better would help. I always have confidence in the resilience of children. If they want to do something, they will find a way.

Tristan did start writing. It’s neither fun nor easy for him. Cutting, pasting, drawing, writing, zippering… all of these things are a challenge. He’s miles away from having the dexterity to button. But with the help of physical therapists he’s making lots of progress. Three times a week he works on these skills now that his surgery and recovery period are over. His letters are jerky, and crooked. Some are backwards in the way that many 4 year-olds do. Markers are better; he doesn’t have to push so hard on them to make a line on the paper.

The letters may be crooked, so is his little smile. They’re beautiful to me. I know he had to concentrate and work very hard to write this well… this is the Valentine Tristan brought home to me on Friday:



This is the one I’ve been waiting for.

It’s going in my memory box. For always.

………………………………………………..

if you missed it, this was last year’s Valentine’s post:

Tristan’s Valentine

My son Tristan is about to turn 4. I haven’t written about him much here. I started thinking about why that is, given that his life has given us more twists and turns than either of our other children. I think it’s precisely because he’s had his share of hardships that I have felt overprotective of him. But it really needn’t be that way.

Tristan’s physical problems are a bit unusual. For those of you who don’t know him, he had open heart surgery at seven months old to move an artery that was compressing his trachea, preventing him from breathing properly since the time he was born. He required feeding therapy to learn to eat after having trouble combining eating and breathing until that point.

He also had problems with his neck. From birth his head sat at an awkward angle. Doctors thought it was muscular torticollis that could be fixed with physical therapy. We did a DOC band to correct the flattened head he had as a result of this “fixed” neck position. But after a while my intuition told me it wasn’t muscular. I felt it was orthopedic, something that would be an extremely rare abnormality. I took him to an orthopedic surgeon who confirmed our fear: Tristan’s problems were more serious than just a tightened muscle.

We were told various diagnoses for his problems when he was about six months old– everything from cerebral palsy to Goldenhar Syndrome. But in the end, when pressed for a diagnosis they jokingly say he has “Tristan Adams Syndrome,” a combination of rare defects in his spine and hands.

The cervical vertebrae in his neck are not formed correctly. Half-formed, or fused together, the vertebrae near the base of his brain are mangled, appearing on x-rays, CT scans, and MRIs almost indistinguishable from one another. His adorable exterior hides a jigsaw puzzle-like appearance on the inside.

While the abnormal vertebrae caused him a severe head tilt to one side as an infant, it now appears from the outside as almost straight. As he’s grown his “z-curve” (two striking jogs in his neck which have thus far balanced eachother out; either one alone would have required surgical intervention already) has improved with growth.

We watch, we test, we monitor. If the congenital scoliosis (meaning a curvature of the spine since birth) worsens, he’ll need surgery to fuse his neck in a fixed state with rods and screws. His neck would not grow any more, and he’d have no mobility in it. Imagine having your neck in a position where it’s extremely short and you can’t turn it at all unless your whole upper body goes with it forever. So far, we’ve escaped this. But we are told that every growth spurt brings risk.

His other oddity are his hands. For the first year of his life we knew something was wrong, but no one could figure out what. He held his hands oddly. His thumbs just looked wrong– more like big toes. And finally, a hand surgeon was able to tell us: he has hypoplastic (underdeveloped) thumbs. He’s missing the muscle at the base of the thumb where the base of the thumb joins the wrist. I had never heard of that before. Likely, you haven’t either. That’s why no one could pick up on it. What does this mean? Functionally, it means his left thumb can’t bend at all. Try to pick something up holding your thumb out straight. Or hold a pencil, write your name. His right thumb bends slightly, but not “normally.” Oh, and yes, of course… he’s a lefty.

He doesn’t like to do things with his hands. He won’t write or draw. He can hold a spoon and fork, but prefers to eat with his hands.

Tristan’s surgeon says around now is a good time to do surgery to help get a bit more function in his left hand. By taking a tendon from another finger on his left hand and transplanting it to Tristan’s thumb, they hope to give him better mobility. It won’t allow him to bend his thumb. There isn’t a surgery that can do this: the muscle and tendon you use for this run all the way up to your elbow (who knew?!).

As I type this I know, looking at my thumbs while I type, that computers will be his saving grace. My thumbs stay straight when I type, and I am sure that he will learn quickly how to type and use a keyboard. He copies Paige and tries to play the piano. I think he might be able to do that too.

I remind myself about the documentaries I’ve seen over the years about people with different disabilities and how they’ve compensated. The YouTube video of the mom without arms who could change a diaper with her feet was one of the most amazing.

I know Tristan’s amazing spirit, his infectious giggle, his sweet and expressive face, his stubborn tenacity will get him through. I know he falls behind on every fine-motor skill evaluation. I know he won’t be able to play many sports well because of his hands or participate in lots of sports or fun activities because of the risk of neck injury.

When he brought home his valentines from school yesterday, his friend Bennett had written his name beautifully on the red paper. Tristan can’t write a letter. He knows them all, but he can’t write them.

My eyes teared up, jealous at the inscription.

I know he’s not going to do that anytime soon.

But I also know that somehow he will.

Someday he will.

And when he does,

that valentine with his name and mine

will go into my special box of keepsakes.

For always.

A psychologist’s perspective on guilt vs. regret

February 7th, 2011 § 31 comments

I’ve written previously about my decision to have my ovaries removed two years ago in order to (hopefully) decrease the likelihood that my breast cancer will recur (“The Impetus of Fear”). Though I tested negative for the BRCA-1 and BRCA-2 genes, my hormone receptor positive cancer feeds off of the hormones that my ovaries produced. To significantly reduce the amount of those hormones circulating in my body (as a pre-menopausal woman of 38) I decided to have a salpingo-oophorectomy (surgical removal of my Fallopian tubes and ovaries). I recovered from the surgery itself within two weeks; the effects of plummeting into menopause overnight have been longer-lasting and in some cases, quite devastating.

As I do with almost any issue in my life, I have repeatedly talked to my mother, Dr. Rita Bonchek, about the ramifications of my decision. This angst has led to many talks about the difference between regret and guilt. As a psychologist specializing in issues of grief, loss, death, and dying for twenty years, she always has a keen ability to separate out what appear to be muddled feelings. She often has ways of explaining complicated topics in easy-to-understand terms and using real-life examples to illustrate her points. She and I have collaborated here to present some thoughts on these two emotions. The ideas on the differences between guilt and regret are hers; I have pushed her to explain things as fully as possible and helped with some of the re-writing.

We hope that they will help you to think more clearly about actions in your life and the emotions you have about them. We look forward to hearing your comments and any follow-up questions you have. Because my mom is not on Twitter, if you have any questions for her, it’s best to put them in a comment below; I’ll post her answers for everyone to read, too. This is meant as an introduction to these two emotions, not a comprehensive analysis of them.

………………………………….

People use the word “guilt” more often than is appropriate. Improperly using the word “guilt” can result in unnecessary emotional distress and harsh self-criticism. The word “guilt” refers to something you did, something which you feel you shouldn’t have done because it was morally or legally wrong. But what if the experience you feel guilty about was not something you caused or had control over? Then you would feel regret, not guilt.

Here is an actual situation: Ann1 was referred by her family doctor for grief counseling. She was unable to cope with her persistent feelings of guilt related to her husband’s death several months prior. Bob was diagnosed with a terminal illness and he was bed-ridden. He needed constant care and attention which was mainly provided for by his wife. Bob was hospitalized for three weeks prior to his death. Ann was with him throughout that time as well.

On the day of Bob’s death, his wife left the hospital room to use the bathroom. When she returned to the room, the nurse told her that Bob had died in her absence. Ann was overcome with feelings of what she termed “guilt” and punished herself for not having been with Bob at the time of his death. For months she could not function and was preoccupied with thinking how terrible she was in being absent when her husband died. She mentally punished herself for breaking the vow she had made to herself to be with him when he died. Instead of focusing on the 99% of the time she had cared for him while he was ill, she focused on the last minutes he lived.

Why shouldn’t Ann feel guilty? Because she did not do anything that caused her husband’s death; she was not there. If Ann had asked the nurse whether it was “safe” for her to leave for a few minutes and the nurse had cautioned her that Bob could die at any time, and then Ann chose to leave, then she could justly experience guilt because she ignored information indicating he could die during the time she was away. In this alternate scenario, Ann had the personal responsibility for making the decision to go, she had control of making the decision that resulted in her absence, and could therefore justly experience feelings of guilt. As a counselor, if someone is justifiably guilty for an action, I would advise them to make a confession, offer an apology, take responsbility, and — if possible– make reparations.

By disproportionately magnifying these few minutes to overshadow all of the months of care Ann had given Bob, the result was that she could not forgive herself. After discussing the difference between regret and guilt, Ann came to see that there was, in fact, nothing to forgive. She understood that she was only responsible for her own actions; Bob didn’t die because she left the room. By reframing the circumstances of Bob’s death, Ann was better able to properly grieve her loss and move on afterwards.

Though Ann did not experience guilt, she did have regret, a universal experience.  Regret refers to circumstances beyond one’s personal control. An unidentified author defined regret as “distress over a desire unfulfilled.” Regrets can pertain to decisions made concerning: education (not getting a degree), career (working at a job that offered good income but no personal satisfaction), marriage (married too young), raising children (being too permissive), medical decisions (sterilization), etc. These and other decisions can be considered mistakes.2

As an emotional response to a distressing experience, the sound of the word “guilt” is harsher and more of a self-reproach than the word “regret.” If you say, “I feel so guilty” you should make sure that the deed and circumstances surrounding it actually warrant your feeling of guilt rather than regret.

Dr. Rita Bonchek has a Ph.D. in educational psychology. She spent twenty years in private practice.

  1. names have been changed []
  2. Most often, individuals regret what they haven’t done moreso than what they have done. Often, people regret not taking chances moreso than regretting the chances they actually took. []

The only t-shirt I would wear

February 5th, 2011 § 4 comments

I’m not a t-shirt kind of girl. If you know me in real life you know I don’t wear shirts with graphics on them. I don’t even wear prints often. A t-shirt with a slogan on it? Well, that’s just not me.

There is ONE slogan that I have seen — and a cancer one at that — that would get through my sartorial roadblocks.

I’ve seen this as a t-shirt phrase, and it’s my favorite one yet:

Of course they’re fake; the real ones tried to kill me!

I wouldn’t design it like this one with the pink ribbon and goofy letters.

It would just be plain, all lowercase, very subdued. Not whimsical or cutesy.

I just may design a custom one… if I do, I’ll share it with you.

The lights come up

February 2nd, 2011 § 2 comments

imgres.jpegI remember distinctly sitting in movie theaters when I was pregnant. At various points throughout the film I’d tune out the words and images and get lost in my belly, feeling each of my children squirm and wriggle and stretch. “What if this is it?” I’d think to myself. “What if I go into labor right here, right now?” And then I’d think to myself, “In just a week or two I’ll be a mother, mother to a person whose body is inside mine but whose face I have not seen, whose voice I do not know, whose skin I have not touched. I’ll be mother to this person for his or her entire life, my life will be shaped by his, and his by mine.” And those thoughts seemed incomrehensible to me at the time. Too large, too vast.

Then four years ago my little mental interludes changed form. “I have cancer,” became the thought that was too big to wrap my brain around. “Right now, while I am sitting here the cells are there. There is cancer in me. Right now,” I thought to myself. Eventually, after my double mastectomy, during my reconstruction, I could sit, arms crossed across my chest and feel the tissue expanders in me. And even now, I need only take a sharp, deep breath to feel the implants in there, reminding me of what has come to be.

Sometimes, when there is a lull in a movie, I still “check out.” Just for a few moments.

As if when I am sitting there,
in the theater,
away from everyday distractions,
lost in someone else’s life,
only then can I think about the larger things that haunt me.

The other night I found myself momentarily thinking about my body, and its cells. “Are there any cancer cells left?” I thought. “What if there are some still there, right now, dividing, multiplying, gathering momentum.”

I sat and wondered if they’re gone. If they’re not. I wonder what the plot will be, how it will end. My favorite movie endings are the ones where you get to see what happened to the characters– how things ended for them, what the final chapter was– an epilogue. I realize I can’t have that knowledge about myself. And I’m not really sure I’d even want to. I guess everyone likes a happy ending. That’s the only kind I really wish I could know about myself.

Having a bad feeling about having a good attitude

January 27th, 2011 § 6 comments

I love this piece in the New York Times about the myth that a fighting spirit and good attitude make all the difference in how (and if) you recover from a life-threatening condition. I wrote a piece in 2009 about this and am reposting here since the topic has received attention this week.

…………………………………

“Having a good attitude makes all the difference.”

People say that to me all the time. I am sure every person who’s had cancer hears that. I think what people are saying is that there is something you can control in all of this mess. There is so much you can’t control, that you have no choice in. People say how you deal with it, how you choose to behave once these things are thrown your way, is up to you.

Here’s what I think:

I think what matters is good health insurance. I think what matters are friends and social support to get you through. I think what matters are children, or pets, or others who nurture your soul and remind you why you are going through all of this: there are others who care about and depend on you.

I think good medicines matter. I think caring and capable oncologists matter. I think talented surgeons matter. I think getting good advice matters.

Why am I resistant to the idea that attitude matters? Not because I don’t believe it. I reject this idea because it places the burden of healing on the individual patient. It places the weight of getting better in his/her hands. I think cancer patients have enough to deal with. We have enough to feel guilty about and responsible for. I think tossing our collective attitude into the mix is a lot of pressure. All eyes are on us anyway.

Now we have to watch how we treat the thing which is killing us.

Having a good attitude says:
the power is in you to survive.
The power is in you to heal.
The power is in you to do well.

But looking at the converse is troubling. The implication is that if you suffer, if you relapse, if you die– it is your fault.
If you had only had the right attitude,
you could have been better at keeping it away.

You could have been stronger.
You could have beaten it.

That may be flawed logic in the philosophical sense but I think it’s worth exploring. Even if that logic can’t be reversed so easily, I think the implication is there: you should have the right attitude because it makes a difference. Difference in what? Difference in your outcome. If it didn’t, then they would not say it.

Or would they?

There is an impetus to control, as I’ve talked about frequently in my writing. You just feel like you need to do something.  I think that’s what people are grasping on to with their advice. They know you can’t do much, so they tell you to control the one thing you can: your mindset about what is happening to you.

Sometimes I just don’t want to have a good attitude.
I don’t necessarily think it makes a difference.
I don’t want to think positive thoughts all day
and see the good in what is happening to me.

I think that can be healthy too.

Payments accepted here

January 27th, 2011 § 3 comments

This post was written at a time when I was feeling down, fatigued, weary. I started thinking of all of the things that I was looking forward to when I felt better, things I hoped for the future, things I was thankful for along the way. These would be my payments; these were things that I accepted for my struggle.
……………………………………

A currency of thanks,
a commodity of gratitude,
a medium of memories.

Hugs
smiles
laughs
tickles
sunny days
warm laundry
long baths
newly-mown grass
freshly-baked cookies
hot coffee
baby snuggles
happy endings
clean floors
baby shampoo
good blood counts
clear scans
easy blood draws
short waiting room waits
no side effects
no hidden costs
generous co-pays
quiet offices
pain-free mornings
guiltless decisions
days without regrets
unconditional love
fading scars
new friends
caring surgeons
information
honesty
openness
truth
validation
appreciation
understanding
sympathy
hope
research
progress
empty parking spaces.

someday, my hope:
no more cancer.

Beautiful (the transitive property & The Scar Project)

January 21st, 2011 § 11 comments

Beautiful.

It’s not a word I have used to describe my body. Ever.
Even when I was young and lithe and strong I didn’t think of myself that way.
After three pregnancies that word was certainly gone from my vocabulary.

I loved and appreciated my body for what it had done, what it could do. However, that feeling was more a result of recognizing its practicality more than its aesthetic appeal.

When I was diagnosed with cancer everything changed.
One aspect: body parts became liabilities.

It doesn’t matter, people said, you are the same person inside.
Was I? Am I?

Ripples replaced smooth expanses of skin.
Rosy scars replaced creamy white flesh.

I didn’t mind them then– I don’t mind them now.
Or do I?

When the glass is half full it is still also half empty.
I can see both views by shifting focus.

I’d rather be scarred than dead…
…but I’d rather have been healthy than ill.

I miss the hormones. My life is not the same since the removal of my ovaries shut down almost all of my estrogen production. One of my doctors told me the change would not be radical. She was wrong. There isn’t a day that goes by that this decision doesn’t affect my life.

When we’re in the thick of it we are afraid. We think fear is bad, but in fact the fear is useful: fear causes us to be brave.

Fear allows us to do things we never thought we would have the strength to do. Chemo was my greatest fear; I literally made myself ill with fear about receiving chemotherapy. I wanted any excuse not to do it. Saying no to chemotherapy would have been the wrong decision for me to make based on my particular risks. My fears of metastasis, dying young, and leaving my children was greater. I needed to do everything I could: that was my mindset. Whatever it takes.

I have reminders every day that I am not who I used to be.
And so, when I think of the words you are still the same person I realize it’s not true.
I’m not the same person… and I think that’s okay.
In fact, I’m not sure it could be any other way.

I ordered the book The Scar Project in October and finally received it two weeks ago. Photographer David Jay has been photographing breast cancer patients who were diagnosed between the ages of 18 and 35. The images are stark, real, true. The book has statements from the subjects, a bit about their cancer experience in their own words. I realized when I looked at them how beautiful the women were. That’s the word that instantly came to mind: beautiful.

With scars, without breasts, without hair… whatever each picture showed I found myself thinking how powerful those images and words were. And then I realized something: I am one of them. If they are beautiful so am I. It isn’t just their bodies, it’s their strength. Maybe my definition of beauty has changed; I just see it as meaning more than it used to.

Now that I am older I see that resilience is beauty. Scars can be inspiring. Scars are the marks we have to show that we have lived, endured, survived. I need to be willing to say that if those women are beautiful, so am I. Why I still have a hard time saying that, I don’t know.

Of course I am sure that is what David Jay wants to happen with his project; he wants to show that the reality of life with cancer is one that can be empowering. I do draw strength from my past, but the mixed emotions inside continue to wrestle with one another. David Jay has succeeded: he has shown strength in beauty and beauty in strength.

I need to do the same.

What does it mean to be a good listener?

January 19th, 2011 § 1 comment

April 1, 2009

How can you be a good friend to someone with cancer? Doing the same things you do for any friend: show you care, express interest in her life, be sympathetic, and offer to help when she will let you. The best thing you can do is to be a good listener.

Being a good listener seems obvious, but it’s harder to do than it sounds. First, you need to remember that if you haven’t had cancer, you aren’t going to really understand what your friend is going through, what she is feeling. You might think you do, but you don’t. You can’t.

The fact that you don’t share the bond of cancer, though, doesn’t mean you can’t be helpful, supportive, and caring. You can be all of these by listening. Some of the most supportive people in my life have never had cancer. It doesn’t matter. They are good friends in part because they are good listeners.

Listening does not entail giving advice.

They are two totally different acts. One requires that you listen while your friends talks. One involves you giving your opinion about how your friend can change and what she can do differently/better.

In times of active crisis, the best thing you can do is keep your opinions to yourself. Unless you truly know what that crisis feels like (the death of a child or spouse, a serious medical diagnosis, or a divorce, for example), your advice will fall into the category “things people-who-don’t-understand  say.” For me, others’ advice usually misses its mark. The result? I feel further misunderstood; therefore, I am more isolated.

My mother taught me the difference between these two acts. “Do you want me to just listen or do you want my advice?” she would ask. Sometimes I wasn’t sure. Sometimes I’d ask for the advice and not follow it. The fact that she gave me the choice, asking the question directly, gave me control. I was telling her how to be helpful– what I needed from her.

I know it’s not easy to just listen. But sometimes asking the specific question, “Do you want my advice or do you just want me to listen?” can help us be exactly the kind of people we want to be — better friends to those we care about.

The Mailbox

January 18th, 2011 § 2 comments

July 18, 2009
I went by my friend’s house today– the one who was just diagnosed with breast cancer. I wanted to put something in her mailbox. When I opened the mailbox it was full of mail already. She hadn’t taken in yesterday’s mail yet.

Of course she hadn’t. Why should she worry about mail when they are worrying about cancer and what it means for their family?
I left the bag in her mailbox on top of the day-old mail and went away, remembering:

Remembering that time in my life two years ago when I was diagnosed with cancer.
I managed to get the kids where they needed to go (I have no idea where that was).
I did the things I needed to do (I have no memory of what they were).
I went the places I needed to go (I can’t remember where they were).

There is no room for anything else in these days, these days in the beginning.
There is no room for anything else except to hear the words again and again,
as if you need to convince yourself that they are true: “You have cancer.”

There is no room to
do anything,
think anything,
say anything,
be anything,
fear anything,
hope anything,
dream anything,
live anything,
love anything,
breathe anything.

In these days there is no room for anything but cancer.

But these days will pass.
You don’t believe it.
Can’t believe it.
But it’s true:
these days will pass.

Your life will change.
You can make room for other things,
better things.

And once again,
there will be room in your mailbox.

You will remember to get the mail because you won’t be thinking about cancer.
You’ll be thinking about the things you should be thinking about,
that you deserve to be thinking about.
Each day.
Every day.
Today

The Business of Living (Connecticut Challenge 2009)

January 17th, 2011 § 1 comment

July 26, 2009

The riders lined up along the narrow street, more of them this year than last. The streets were still damp. At the first corner of the course, a large puddle remained from the previous night’s storm. Volunteers handed out yellow balloons to cancer survivors; the balloons danced and tugged at their strings, waiting for release.

The cyclists waited along the street, some joking, some quiet. Some looked up at their balloons, remembering. Some looked at the backs of the jerseys of their fellow riders, mentally noting how many survivors there were among them. As the announcer droned on about the course, ensuring that the 75 and 100 mile riders had maps, we all breathed deep breaths, psyching ourselves for some of the emotional moments about to occur.

An 11 year-old girl sweetly and strongly sang the National Anthem. Then the announcement came to release the balloons. The announcer said this bike event was for us, that it was in our names the riders were going. We let the balloons go and watched as they floated into the sky. Everyone clapped, some tears were shed. If only we could erase the pain that we’d had as easily.

And then it was time for the Survivor’s Lap of Honor. Any cancer survivor who is riding in the Connecticut Challenge takes an honorary lap around the starting area to be recognized before the official start of the event. Some of the cyclists are riding during treatment, some of them during chemo. How they get on a bike and ride I do not know. At the front of that pack of Survivors is my friend Lucas Whittaker. At age 11, Luke is the youngest cancer survivor at the Challenge. As such, he receives special notice and leads the pack.

Luke has beaten leukemia twice. When they announced his name and he started off on his lap of honor before starting his 25 miles, his father Martin (about to start his grueling 100 mile course which he rides every year in Luke’s honor) turned around to me, his eyes full of tears, and we sobbed, holding each other for a minute. “Your beautiful boy,” I said. “Look at your beautiful boy.”

He knew I understood. What this disease had done. How it had challenged them — his family. When Luke relapsed, it was a bone marrow transplant from his younger sister Grace that saved his life.

Luke’s mom, my dear friend Brenda, made her way over from where she was standing with their other children. She and Martin hugged and then she and I did too. We don’t even say anything anymore. We just hug. And sometimes we do the thing where our bodies just shake together as we silently sob.

And then we parted, and looked at each other.
And we knew: you can’t let yourself grieve or feel or cry anymore after that.
You’re going to have to take an IOU on loss for now, because there’s work to be done.
There’s business to be done — the business of living.

We turned back to the children. Back to Luke. And Martin. Back to my own children who had come to send off the riders. And the race got started. We wiped our tears and we cheered. We watched as every last rider pulled away. And then Brenda and everyone else walked toward the tents. And I stood for a moment, and cried a bit more. And then I realized the kids needed me. Again, the feelings would have to wait.

We made signs for the people we know who have had cancer. Volunteers take these posters and attach sticks to them; then other volunteers post them along the course for the riders to see as they make their way home. The list of people we know who have been touched by cancer was long. We made a sign for my friend who just got diagnosed with cancer ten days ago. One for our next door neighbor Catherine who is in remission from leukemia. My beautiful brave girlfriends who are in remission from breast cancer. My spectacular mother (also in remission from breast cancer) who is my continuing role model on how to charm the world with a smile. Paige made a special sign for Luke. Colin made one just for me that said In honor of Mom on it.

There was a cyclist who had MOM written in Sharpie pen on his leg. I couldn’t figure out why he had written it in the precise manner and location he had. All day I was thinking about it, and I couldn’t figure it out.

Last night after I drove the babysitter home, I was pulling into my driveway and it hit me:
he’d written it where he could see it when he was on the bike.
He wanted to see her name when he looked down.
When he got tired and looked down and needed strength on a hill or along the route,
he would see “Mom” written on his leg in this neat block font and think of his mother.

I don’t know if she’s living with cancer or if she died from it, but that image will stay with me.
That son, riding his bike 100 miles yesterday, thinking of his mother when he was pushing his body to the limit.

The business of living: that’s what yesterday was all about.

My dream: to keep you safe

January 16th, 2011 § 0 comments

A previous discussion about inspiration and setting an example provoked my friend Laura to write to me, “If something ever happens to me where I have to dig deep to find that strength that you have found (and shown), I will think of you. Often. And re-read your blog. Often.”

This was the highest compliment and I appreciated those words immensely. Her words got me thinking.

So many of my friends have mothers who’ve had cancer. In college, my two closest friends, Alex and Deb, both had mothers who had breast cancer. Somewhere in that experience was an expectation for them that someday, inevitably, they would have it too.

It was many years before my own mother did. And then right on her heels, so did I. Before Alex and Deb did. And so, like my mother was for me (see “Everyone Needs a Trailbreaker”), I suddenly became the trailbreaker for my best friends.

I’ve gone through some cancer scares with friends and acquaintances over the past three years. I’ve sat in waiting rooms, taken phone calls, written emails, met with women in person. I’ve helped friends, strangers, and friends of friends.

When I was young someone teasingly called me a walking encyclopedia. Somehow it still seems true. My husband only half-jokingly shakes his head when he hears some of the questions people ask me. He sometimes says, “They do know you’re not a doctor, right?”

I know that I’m the first of my friends to have breast cancer. And have it “bad.” The whole nine yards. That experience comes with responsibility. I know that having cancer at 37 means that I will be that resource, that friend, that support system.
In the future, others will need me. Friends will ask me how to help, what to do, what things mean.
There is a lot of pressure coming my way and I think about it already: what if I let them down?
That’s the kind of person I am.
I am already worried not only about getting through my own experience; I’m worried how I can help my friends if their time comes.
And statistically it will.
I’m worried who will be next.
I’m angry someone will be next.

I want to be the lightning rod.
I want to take in on for them.
I want to protect them.

Laura, I want to protect you:
I don’t want you to have to read my blog for strength.
I want you to read it because you want a window into a world you never have experienced. And never will.

That is my greatest hope, my greatest dream.

If I could sleep, that would be my dream:
To keep you all safe.1

  1. October 6, 2010 []

Living with Uncertainty

January 16th, 2011 § 2 comments

I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.

Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).

At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.

When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?

I realized that her parents have somehow come to terms with uncertainty, as we all must.

In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.

I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.

But just as Monica’s parents have learned to deal with that uncertainty, so must I.

Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.

I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.

The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.

I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing, living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.

October 27, 2010

Things don’t happen for a reason

January 16th, 2011 § 19 comments

November 8, 2010

One of the phrases I heard often during the emotional events of the past few years is “Things happen for a reason.” The other night while Clarke and I were watching a reality show one of the contestants spoke the same phrase as she predicted elimination from the show.

“I think everything happens for a reason,” she said.

“No they don’t!” I reflexively argued with the screen.

“Why does that make you so upset?” Clarke asked.

“Because it’s just a way that this woman is rationalizing why this bad thing— elimination from a contest she’s competing in— is okay. She’s trying to tell herself that things really aren’t as bad as they are. She’s trying to console herself that there is a purpose in her suffering… that it will lead to something bigger and better, and that is just not necessarily the case.” I said.

I don’t think things happen for a reason and I find it unsettling when people want to tell me that cancer, or my mother-in-law’s death, or anything that has been a challenge has happened as part of some grand plan for something better.

I just don’t believe it. And I don’t want you to believe it about my life, either.

I think things just happen — and when they do, you have to decide how you are going to handle them. Those actions, those responses, can teach you lessons, but they are lessons you teach yourself. You can grow, get stronger, do something that you otherwise never would have. Alternatively, you might learn that you made a mistake and should deal with a situation differently the next time it comes up.

My attitude?

Don’t give away the credit.

Don’t minimize the hurt or disappointment.

Don’t rationalize why it isn’t as a big a deal as it is.

There isn’t necessarily a purpose in suffering; it’s not part of a causal narrative that “passing the test” will get you to the next step. You make your own tests, you find your own lessons. But using the word reason implies that it was given to you, designed for you.

And I just don’t believe that.

These things are not tied with a pink ribbon

January 14th, 2011 § 25 comments

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.

You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.

“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.

The importance of open-ended questions

January 13th, 2011 § 3 comments

There are ways in which I will never make you as readers understand what it’s like to have cancer if you haven’t. However, part of the reason I write this blog is to try to explain some of the cancer patient “mentality” (if you’ll accept such a generalization) to those of you who haven’t had cancer. To that end, you can hopefully be better friends, partners, spouses, sons, and daughters. There are things I didn’t know before I had cancer that I wish I had understood.

It’s not that I am special. It’s not that I am so smart. It’s that I have been there. Hopefully sooner than you have. And so I am reporting back from the field. To try to help you. Prepare you. Because if there is one thing I know, one thing I know for sure: you will know someone. It might be your friend. Your parent. Your child. Or even yourself. Maybe you already know someone. But one thing is for sure: you will know someone who gets cancer. And you know what? You already know me.

One of the ways your life changes when you have had cancer is that you begin to understand the phrase “It’s never over” in a whole new way.

As soon as you hear the three words, “You have cancer” your life changes. From the time you hear those words everything is different. You now have a history of cancer — even if it’s a cancer that can be removed and you don’t need any other treatment. It is now a history that puts you at risk. Now every medical problem, every medical history you give, every question mark, every medical mystery must be filtered through the lens of a history of cancer.

A woman I know from college was writing a brief note to me by email to thank me for something nice I’d done. The last part said, “Hope you’re feeling on top of the world (or close to it).”
My reaction? First I burst out in laughter.
Ah, the naiveté of the healthy!
On top of the world! Ha!
Then it actually got me riled up.
Angry.
How dare she think it was over.
Then I got angry at myself for lashing out.
I became contrite.
Why should she know better?
How could she know better?
It isn’t fair to expect people to know better.
Only once you know better can you do better.
If she only knew.

What was I going to do?
Write back and explain to her the error in her thinking?
Should I write back and say:
I counted every day, every hour, every minute, every second to be “done.” But when each thing was “done” there was always something else I was counting toward. Always something else looming. I’m never “done.” It’s never “done.” It’s never “over.”

The language we use reveals a lot.
When someone says,
“You must be on top of the world,”
that means:
“You should be”
“You ought to be”
or
“I expect you to be.”
For someone like me, if I don’t feel like that it’s hard.
I get angry. I want to say all of the reasons why that’s not realistic– why that’s wrong. Why that’s precisely what I’m not feeling.

But then, when my anger cools, I take that and turn it inward. And all I feel is disappointment. Disappointment in myself. Maybe I should feel like that. Maybe I really should feel on top of the world. The fact that I don’t means I’m not as far through this thing as I thought. It reminds me I’ve still got a lot of work to do.

Maybe the battle is not really with cancer. Maybe it’s with myself.

But I think the point remains: just surviving cancer isn’t necessarily enough. It’s not enough to make you feel on top of the world.

You can help those who have had cancer by not making the leap that just because they have lived through this round that they have “won”; don’t assume that they will necessarily be ecstatic, “done,” and ready to move on.

Rather than telling people what they “must” feel, we all can be better friends and listeners by asking questions rather than making statements.

Rather than saying “you must feel on top of the world” think of the difference it would have made if my friend had said, “Now that your treatment and surgeries are over, how do you feel?”

An open-ended question is always a safe conversation starter. I’m going to try it more often in my everyday life; I hope you will too. My wish is that it begins some good conversations between you and someone you care about.1


  1. This is the 4th installment of a week-long sharing of some of my favorite blogposts over the past few years.
    August 13, 2009 []

I Think So Too

January 12th, 2011 § 11 comments

That chair you’re sitting in?
I’ve sat in it too:

In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.

That feeling you’re having?
I’ve had it too:

Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.

That day you’re dreading?
I’ve dreaded it too:

The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” The day you wear a pink shirt instead of a white shirt. Anniversary day. Chemo day. Surgery day. Scan day. Decision day. Baldness day. The day the options run out.

Those reactions you’re getting?
I’ve had them too:

Stares. Questions. Pity. Blank looks. Insensitivity. Jaw-dropping comments.

Those side effects you dread?
I’ve dreaded them too:

Nausea. Vomiting. Pain. Broken bones. Weakened heart. Baldness. Hair loss. Everywhere. Unrelenting runny nose. Fatigue. Depression. Hot flashes. Insomnia. Night sweats. Migraines. Loss of appetite. Loss of libido. Loss of breasts. Phantom pain. Infection. Fluid accumulation. Bone pain. Neuropathy. Numbness. Joint pain. Taste changes. Weight gain. Weight loss. Some of them happen. Some don’t. Eventually, though? You name it. It changes. Temporarily anyway.

That embarrassment you’re feeling?
I’ve felt it too:

Buying a swimsuit. Getting a tight-fitting shirt stuck on my body in the dressing room. Having a child say “You don’t have any eyebrows, do you?” Wearing a scarf. Day after day. Wondering about wearing a wig because it’s windy outside and it might not stay on.

That fear you’re suppressing?
I’ve squelched it too:

Will this kill me? How bad is chemo going to be? How am I going to manage 3 kids and  get through it? Will my cancer come back and take me away from my life? Will it make the quality of life I have left so bad I won’t want to be here anymore? Is this pain in my back a recurrence? Do I need to call a doctor? If it comes back would I do any more chemo or is this as much fight as I’ve got in me? What is worse: the disease or the treatment?

That day you’re yearning for?
I’ve celebrated it too:

“Your counts are good” day. “Your x-ray is clear” day. “Now you can go longer between appointments” day. “See you in a year”day. First-sign-of-hair day. First-day-without-covering-your-head day. First taste of food day. First Monday chemo-isn’t-in-the-calendar day. Expanders-out, implants-in day. First walk-without-being-tired day. First game-of-catch-with-the-kids day. First day out for lunch with friends day. First haircut day. “Hey, I went a whole day without thinking about cancer” day. “Someone asked me how I’m doing, I said ‘fine’ and I meant it” day.

That hope you have?
I have it too:
No more cancer.

Don’t you think that would be amazing?
I think so too.

January 10, 2010

Hey, Melissa, if you can do it, so can I (Being bald in public)

January 11th, 2011 § 9 comments

June 18, 2010

There. I did it.

This picture shows me one month after I finished chemo. Peach fuzz growing. Eyebrows gone. Eyelashes gone. Both pencilled in to hide their absence.

This is the only picture I have of myself bald. When I was a shiny cue ball it never occurred to me to document it. If you look closely at my left eye, you’ll see a tear resting on my lower lid. I had just stopped crying. Long enough to put on makeup and flash that killer smile. I was just about to get my tissue expanders out and have my silicone implants put in. It was right before my 38th birthday. That’s what I told my plastic surgeon I wanted for my birthday– to be done with that next phase of my reconstruction.

It was hard to go in for that particular surgery at that particular time in my treatment regimen. When the staff came to wheel me in I had to remove my scarf. My surgeon hadn’t seen me bald. The nurses, my father, my doctor… all of them saw my head then. Of course it was run of the mill for them. They saw cancer patients all the time. But for me it was another way my dignity, my identity, my humanity were being stripped from me. I donned the fabric shower cap gladly, happy to have something (albeit flimsy) to conceal my naked head.

Only moments before, I stood in the bathroom with my plastic surgeon while he marked my body once more with his ubiquitous purple Sharpie pen. We talked again about final details of my breasts. I realized how these conversations had become so routine between us. While the subject of my breasts was no longer one that even caused a pause in chatter for us, I didn’t want him to see my head. Somehow it was more personal, more private, more embarrassing to me than the fact that he not only saw, but touched, drew on, and even photographed my breasts on a regular basis during reconstruction. Those interactions were scripted. Defined. But my head? I hadn’t realized he was going to see that. And there was embarrassment there. It wasn’t happening on my terms.

So today I am taking control and doing it on my terms. When Melissa Etheridge performed bald at the Grammys in 2005 (before I was even diagnosed) I remember thinking, “She is strong. She is real. She is brave. She is beautiful.” What she did in that moment was important. I bet it was liberating to her. So I’m going to try it. It’s too late for me to try it in reality (and I don’t want to pull a Britney Spears and shave my new hair off to be bald again).

Today1 is the 2 year anniversary of the day I finished chemo. So, in celebration, I’m taking off my metaphorical scarf. I’m going bald here today. I want to see how it feels.

  1. June 18, 2010 []

Let’s Go (The double mastectomy)

January 10th, 2011 § 10 comments

January 30, 2009

I had two surgeons that day:
one just wasn’t enough for the job.

The surgical oncologist would take away,
the reconstructive surgeon would begin to put back.

Before I headed off into my slumber,
I stood as one marked me with purple marker.

He drew,
he checked,
he measured.

And then a laugh,
always a laugh to break the tension:
Surgeons must initial the body part to be removed to ensure
they remove the correct one.

But what if you are removing both?

How silly to sign twice,
we agreed.

And yet he did,
initialing my breasts with his unwelcome autograph.

The edges of the yellow fabric measuring tape he used
had purple fingerprints up and down their sides;
use after use had changed their hue.

And now it was my turn to go under the knife–
a few more purple prints on the tape.

I got marked many a time by him that year.

Endless rounds of
purple dots,
dashes,
and lines
punctuating my body
with their strange, secret blueprint
only those wearing blue understood.

We stood in front of mirrors
making decisions in tandem
as to how my body should and would take new shape.

Two years today and counting.

Moving forward.
Sometimes crawling,
sometimes marching,
and sometimes just stopping to rest
and take note of my location.

Numb inside and out,
but determined.

Grateful,
hopeful,
often melancholy.

Here comes another year
to put more distance
between
it and me.

Let’s go.

Friday fun: 11 words for 2011

January 7th, 2011 § 3 comments

I’ve referred to Judy Clement Wall’s blog a few times… on Fridays she does a wrap-up of things she’s read and seen and thought about during the week. This week she found a YouTube video clip on “11 Words for 2011” and gave her own. I have many serious topics to write about soon, but first I decided to join Judy in doing my 11 words. I would love to hear yours: it literally only takes a minute or two. A while ago I did an alphabet and loved doing that exercise too. I bet it will be interesting to look back on them at the end of the year.

Not sure if these are supposed to be wishes, or hopes, or the first thing that pops to mind.

1. cancer

2. hope

3. health

4. love

5. friends

6. Twitter

7. books

8. blog

9. family

10. coffee

11. smiles

That’s what came to mind… how about you?

Some days

January 6th, 2011 § 14 comments

Some days I say to myself, “Enough with cancer.”
Some days I say, “That’s enough. No more.”

No more thinking about it.
No more doing.
No more helping.
No more advocating.
No more educating.
No more communicating.

But then I say, “There’s still so much to do.”
There’s still so much to say.
There’s still so much to hope for.
There are still so many who suffer.

And so I am pulled back in,
Writing, talking, sharing.

Some days I want to talk about anything but cancer.
But I remember this is the new me,
This is my new life.
This is who I am.

And as long as there are others who come after me,

I will do what I can…
to hear,
to help,
to hope.

The Tortoise and the Hair

December 30th, 2010 § 4 comments

One of my favorite romantic movie moments occurs between Denys (Robert Redford) and Karen (Meryl Streep) in the movie Out of Africa. The two lovers are out in the African desert at a fireside camp. Karen leans her head back into Denys’s hands. He washes her hair gently, then cradles her head in one hand and pours water from a pitcher, slowly and gently rinsing the soap from her hair after he’s done washing it. It’s a tender moment, to me utterly soft and sensual.

Before I left the hospital after I had a double mastectomy, the staff told me I might not be able to lift my arms over my head. With both sides affected, they said, I’d likely be unable to wash my own hair.

Recovery is slow in the week after surgery. A clear thin tube (like aquarium tubing) is literally sewn into a small hole in the skin under each arm. It carries excess fluid away from the mastectomy site as it heals. Fluid is collected into a small “bulb” and measured every few hours. After certain medical criteria are met, the drains are removed, the incisions sewn up, and then you can finally take that longed-for shower.  Eight days after the surgery I received the all-clear. As any mastectomy patient will tell you, the day you get your drain(s) out is a great day.

Only then did I try to lift my arms. And hurt it did. I tried to shrink down into my body. I tried to be a tortoise withdrawing my head back inside my shell, shortening my height so I wouldn’t have to lift my hands so high to reach my hair. It was a painful challenge. I worked up a sweat trying to get my fingers to touch my scalp. I knew it was a questionable proposition. But I thought I could do it.

I thought about that scene— that romantic tender scene from Out of Africa. And I started laughing. I laughed and I laughed and tears came down my face. That cry hurt. It was one of those “I’m laughing and I’m crying and I’m not sure if it’s funny or sad or both and I don’t want to think about it so I’ll just go with it and I hope I’m not on Candid Camera right now…”

I was laughing at the absurdity of it. Here I was. It was my chance to get Clarke to wash my hair. My big fantasy moment. I was going to be Meryl Streep and he was going to be Robert Redford and he was going to wash my hair. Except I couldn’t move without pain. And I certainly wasn’t feeling romantic. I had just had my breasts removed. And I had these weird temporary breasts (tissue expanders) in their place. And my chest was numb. And my  underarms hurt from having tubes in them for a week.

Because I hadn’t properly showered I still had purple Sharpie hieroglyphics all over my chest. And I had no nipples. And I had big scars and stitches in place of each breast. And a small angry scar with stitches under each armpit where the drain had just been removed. Let me tell you… this was clearly not how I envisioned beckoning my loving husband to come make my little movie scene a reality.

Now, don’t get me wrong. Had I called him from the other room, he would have done it in a second. He would have been there for me, washed my hair, and not made me feel the bizarre, odiferous (!) freak I felt at that moment. And I would have loved him for it. But I did not want him to see me like that.

In that moment I had a dilemma. What kind of woman was I going to be?

What kind of person was I going to be with this disease from that moment going forward?

I was going to push myself. Do it myself.

I wasn’t going to be taken care of if I could help it. I knew I was going to have trouble asking for help, have trouble accepting help. I knew these things were going to be necessary. But I also knew they were going to cause me problems. That’s the kind of person I am.

I knew asking for and accepting help were actually going to make me feel weaker than I was already feeling. And it was only the beginning. I knew these actions were going to make me feel weaker than I knew I was going to get. I wanted to do everything myself for as long as I could. That was what was going to make me feel alive: doing it myself.

I am not sure I did the best job washing my hair. I probably missed a spot or two. But I did it. And I didn’t ask for help.

Granted, it was something small.

But in that particular moment, on that particular day, that particular act gave me a feeling of pride as big as anything else I could have possibly accomplished.

 

a postscript: I wish I had been more accepting of help in the early days. I wish I had not seen it as a personal “weakness” the way that I express here. I don’t want to change what I wrote then, but I do want to say that I don’t think I was right to push myself so hard. If I had it to do over again I would accept help more often; maybe not for the hair-washing, but definitely for other tasks that I should have outsourced. I have learned from my experience.

A Close Call: The Danger of Carbon Monoxide

December 30th, 2010 § 8 comments

We are at my father-in-law’s house in Wyoming at the moment. On Wednesday morning, ambulances and emergency vehicles started arriving down the street. An EMT soon came to our driveway and said to one of our family members, “We have a lot of sick people. Can we use your garage for triage?” She of course said yes. “There’s been carbon monoxide poisoning,” he said, and returned to the scene.

Nothing happened for a while. We saw lots of vehicles arrive but didn’t see any ambulances leave with patients. Maybe it was a false alarm, we thought. We hypothesized what could have happened, how many affected people there could be. It was a brand new house, only occupied for a month or two. I’d seen a heating and cooling truck on the street an hour before; could that be related?

The emergency workers came back. “We need space to have them come inside and warm up,” one said. We readied the house, clearing space on couches, chairs, made sure we had mugs for warm drinks. Then we waited.

Eventually they started a slow and dazed parade the few hundred yards from their house to ours; one of the first was a young girl with blonde hair who looked stunned. She had snow-covered outerwear on. I asked her if I could help her take it off and if she was scared. She nodded. I reassured her that she was safe, everything was going to be okay. In the way that children do, she bounced back quickly, playing with a puzzle within minutes and laughing.

The grandparents, however, sat on one of the couches with oxygen masks on. They looked confused and pale. Each family member had a color coded tag with their carbon monoxide level on it. Fourteen family members had been in that house. The owners of the house had a few of their children and some grandchildren there for the after-Christmas break. They’d arrived to cold temperatures and cranked up their new heating system, all propane-generated. The heat didn’t seem to be working right. It cycled on and off quickly, wasn’t generating enough warmth for the large house. They’d used the secondary heat source– radiant heat in portions of the house (also propane-generated).

By Tuesday night some of the people in the house were vomiting, complaining of bad headaches. Of course, at high altitude headaches are common, especially after first arriving in town. Symptoms were dismissed as common illness, aftermaths from travel. The next morning, however, by the time the heating repairman was due to arrive, some family members were lethargic, having trouble getting out of bed in the morning.

The repairman arrived at the address expecting a commonplace heating issue. The second he stepped inside the house, however, the carbon monoxide detector on his belt loop began chirping. “You’ve got a carbon monoxide issue,” he told them, “get everyone out of the house NOW and call 911.”

The pieces fell into place… the headaches, vomiting, lethargy. Those in bedrooms closest to the boiler room were more severely affected. Usually infants, pregnant women, those with respiratory trouble, and the elderly can be more severely affected. And so, the fourteen family members and dog left the house that had been slowly poisoning them with toxic air.

Carbon monoxide binds with the hemoglobin in the blood more quickly than oxygen, making the hemoglobin unable to carry the oxygen the body needs. Without oxygen, of course, tissues start to die and eventually death will occur. Breathing pure oxygen after exposure takes the half life of carbon monoxide from 320 minutes to 80 minutes. The CO will be replaced with the oxygen it needs and poisoning will stop.

The medical team kept re-testing everyone using an oxygen saturation monitor (inserting a finger into a clothespin-shaped device, also known as a pulse-ox, or pulse oximeter). As the minutes and hours went by, their numbers came down. Some of them had gone straight to the hospital, others would later go to be double-checked after questionable readings or because of their age. At the hospital, blood tests are also used to check the percentage of hemoglobin that is CO.

Smokers will have a higher baseline percent than non-smokers because they have carbon monoxide in their blood as a side effect of smoking.1 The triage team had a tag for each person, recording each person’s current measurement. The cards looks like large luggage tags and had red, yellow, and green stripes indicating danger and safety zones. Those with higher levels would have to go to the hospital for monitoring. We kept the dog here while they went, still stunned at the turn of events.

They told the owner he wouldn’t be allowed back in the house. The repairman had his own level checked, and hypothesized about the cause of the problem — improper installation or blocked venting, most likely. “You won’t be able to go back in,” he told the owner. “We don’t want to,” the owner said through his oxygen mask.

I sat across from the owner. “Did the monitors malfunction, too?” I asked, curious how this brand new house could have been the location of such a dangerous situation. “The house doesn’t have carbon monoxide detectors,” he said, shaking his head. “The whole house runs on propane.” No one had told him he should have the detectors.

And so, that is the lesson I wish to share here today. Read about carbon monoxide. Educate yourselves about what conditions in your house can cause the toxic gas (the list of causes is more extensive than what I knew). Get carbon monoxide detectors installed, either by doing it yourself or in combination with your alarm system.2 Newer, self-intalled ones have batteries that last up to 7 years and units cost between $20 and $80 each. Placing them near your bedrooms is best.

Some people mistakenly believe that because they have smoke detectors they are protected from CO poisoning. This is not the case. The detectors are separate and detect different things. You need both.

Carbon monoxide gas is particularly pernicious because, unlike smoke, it’s not detectable by sight or smell. You won’t know it’s there. It can make you drowsy enough to go to sleep and never wake up.

Different states have different statutes about the installation of detectors in new dwellings. For now, it’s not national law. This means it’s up to you to protect your family. Each year reminders go out during daylight savings to check the batteries in your smoke detectors. Please allow me to use this space to ask you to go buy belated holiday gifts for your family: carbon monoxide detectors. It could be the best thing you ever do.

The family across the street was lucky: everyone will recover. There is still danger of long-term health effects from the exposure, but they are all alive, including their pet. They were lucky. But each year 400 Americans die, 20,000 visit emergency rooms, and more than 4,000 are hospitalized from carbon monoxide poisoning.

Please don’t be one of them.

** A few days after I posted this piece we saw the homeowner. He reported that the family was able to return to the house after the cause was identified and a temporary solution had been made. They discovered that the heating vents were blocked by extensive snow (2 feet) on the roof and chimney. The heating company has made a temporary pipe system to shunt the vapors outside. Also, they’ve installed eight CO detectors throughout the house. Given the extensive snowfall this year in the Northeast, it’s important to see how extreme weather can pose unforeseen dangers.

  1. Interestingly, I learned taxi drivers have a very high level of carbon monoxide in their blood from constant inhalation of exhaust fumes []
  2. ours is wired into our alarm system so that if we were not home or had already fallen victim to poisoning, the alarm would send the alert to the police station []

The myth of the New Year “fresh start”

December 28th, 2010 § 9 comments

There isn’t anything magical to me about 12:00 A.M. on Saturday when 2011 arrives.

Sure, you may have made some resolutions or more informally said to yourself that “things will be different in the new year” but chances are, they probably won’t.

The concept of liminal time is one I learned in graduate school when I took many graduate classes with Eviatar Zerubavel. Professor and author of many books in cognitive sociology, Zerubavel used The Fine Line: Making Distinctions in Everyday Life to explore the ways in which we create mental boundaries where no clear ones exist for the purpose of keeping life ordered. That is, we artifically make distinctions where they may not exist, or their empirical boundaries are far fuzzier. For example, while “life” and “death” may seem discrete, polar opposites, public debates over when does life begin? (conception, birth) and what constitutes the end of life? (brain death) are, of course, far more controversial. At first glance the question Is it alive or dead? seems deceptively simple.

And so while “clean breaks” and “fresh starts” for the new year sound lovely, in essence there is no reason to believe that just because the numbers 2011 are attached to something will necessarily mean a life different than 2010. While taxes and health insurance may get reset on January 1st, the financial situations and health statuses that carry over from December 31 are unlikely to be very different once the metaphorical calendar page has been turned.

Years ago, of course, the calendar was real, and so was the page. We purchased new datebooks and the clear, fresh pages symbolized the new start we would have. While some maintain this tradition, others (like me) have abandoned the tangible book-style calendar for the electronic one. The same swipe which turns us from December 30 to 31 takes us from 2010 to 2011. The joy of the trip to the stationery store to pick a new datebook is gone for me. My new year begins without effort.

We like to think a new year will bring new things. We hope it will mean the end of unpleasant situations in our life. We often make resolutions to help ensure that old habits will not be repeated. But there’s a reason gym attendance falls off sharply in February and March as enthusiasm wanes and old habits resume.

This isn’t to say that changes can’t be made. This news should not be considered depressing. On the contrary, the message is to say that they can be made any day, at any time. Perhaps the new year is easier to designate as the “fresh start.” But in the realm of cognitive sociology, there is no reason to expect that 12:00 on January 1st, 2011 will be any different than 11:59 on December 31, 2010.

So use the new year as a starting point if you must, but keep in mind that any day of the year will do. It’s easy to say 2011 will be better or different. But in my mind it’s just another day, dealing with the same things as any other. And thinking it’s going to be different or better only serves to set myself up for disappointment if it’s not.

How about you: In your experience is thinking about the new year as new helpful? Do you make resolutions? Do you stick with them? Do you prefer to make resolutions and fail rather than not make them at all?

Through the front door

December 26th, 2010 § 6 comments

I don’t know what it’s going to feel like to walk into the house.

Her house.

It’s been 14 months since my mother-in-law died and in a few hours I’m going to walk into the house that was the last place she slept before she died. The bed she slept in will be there. All of her Christmas decorations. Her towels. Her dishes. All of her things are going to be there.

Christmas has been strange already.

I didn’t send her my itinerary, of course.

I didn’t call her on Christmas Day to thank her for a bounty of presents for the children.

I didn’t call her to tell her about the bracelet Clarke bought for me that I know she would have loved.

There are so many things I didn’t do—and then there are the things I am doing:

I think about what it will be like to walk over the threshold and into the foyer and know she isn’t going to be there to welcome me.

I think about the Christmases past and can’t decide whether to laugh or cry.

I can’t imagine what it’s going to feel like to be in her house without her. There will be nineteen of us together this year. One of my nephews was two days old when she died. One of my nieces wasn’t even born yet. And I know that every time I hold those babies part of me will be treasuring that feeling for Barbara, wishing she were there with us, doing what she loved most: being with her family and snuggling with her grandchildren.

I miss you, Barbara. I don’t cry every day anymore. But I still cry often. And this time of year, perhaps more than any other, just feels empty without you.

I was in Wyoming this past Spring at the court hearing for the man who was driving the truck that hit Barbara’s car and killed her. On a cold Spring dayI was in a car when I went over the exact place she died. It was a spot on a highway, a piece of asphalt in the midst of expansive vistas filled with mule deer and brown grasses. When I passed over that spot, identifiable by the mile marker on the side of the road I waited for it—something. I waited for a shift, a tingling, a sign that it was special. I wanted there to be something so that everyone who passed that mile marker knew that right there, at that spot, one of the most special people in my world died.

And yet, it was just road. Nothing happened. No one would have known.

This trip is different, though. Each and every one of us is going to feel the seismic shift when we walk through that front door this holiday season. In the same blink of an eye it took to cross the spot where she died, I will walk through the doorway and into her house.

It’s time. It’s time to feel that shift.

We keep moving on, but moving on does not mean forgetting. Moving on means weaving the feelings of grief and pain and sadness into our everyday lives.

We must keep going. We have kept going this year.

But it’s not the same. It never will be.

49 years and counting

December 25th, 2010 § 7 comments

My parents, on their honeymoon, in 1961:


On October 24, 2008 the Bonchek College House at Franklin and Marshall College was dedicated. The building is a dormitory and part of the new residential system at my alma mater. On that night I stood and spoke about my parents; I wanted to show the personal side of these two wonderful people.

It was easy to write about my parents. They are both unique and talented individuals, and it is with great pride that I introduce them here to you. On Christmas Day, forty-nine years ago my parents were married. Staying married for forty-nine years is an amazing accomplishment; however, it is only one of the many ways my parents have been role models for me.

I struggled with how to honor my parents and their anniversary. Of course, the best way I know how is in writing. I re-read the speech I gave at the dedication and decided to share it here in honor of their special day. Mom, Dad… I never forget how lucky I am. I never forget what you have given me both in sacrifice and by example. It really is an honor to be your daughter.

Here is the text of the speech I gave, as it was written:

On Halloween night 17 years ago, my life changed. On that night, my best friend Alex Welch and I attended a costume party at Chi Phi Fraternity, right down the street. On that evening, she introduced me to a Senior on the swim team, Clarke Adams. Coincidentally, he had lived in South Ben1 during his time here, and we hit it off instantly.

Six years later, we were married here on campus in Nevin Chapel. It really does feel like things have come full circle to be here with my parents and my family to see our family name here on this building.

F&M obviously holds a special place in my heart for the people I met here. Franklin & Marshall also nurtured my mind as well. My education here, particularly the dedicated instructors in the Sociology department… Carol Auster, Joel Eigen, Katherine McClelland, and Howard Kaye, along with many others, really pushed me not just to learn, but to think. And if you know how to think, you can learn anything.

One person here really touched my mind and heart and though he’s miles away I would like to mention him. Professor Joel Eigen, my friend for 20 years, is away on sabbatical in Australia. As a high school senior here in Lancaster, I took one’s of Joel’s sociology classes. I then went on to Cornell University where I realized that the experience I had in Joel’s classroom really was true education, and I didn’t want to waste my remaining college years without that.

I transferred here for my last 2 years and worked with Joel as research assistant. He was a professor, a mentor, and a friend– all of which are still true today. I was in touch by email with him early this morning and told him how much he exemplifies the nurturing of the mind and person that happens here.

This coexistence of the head and heart applies not only this fine institution, but also to that of my own personal faculty– my parents.

My father, as those of you who know him can imagine, focused first and foremost on training my mind. At every opportunity, my father has been– and is– a teacher, an instructor, an educator.

When I asked my daughter Paige what she thinks of first when she thinks of Grandpa she said, “How long his answers are when you ask him a question.” That is certainly my father.

What her comment shows is that my father prizes knowledge– rational knowledge in particular. He takes the role of parent as a teaching one. He did this when I was 3, and he still does it now that I’m 39.

Now as a grandfather to 5 grandsons and 1 granddaughter, he still uses every opportunity to inform others. He is brilliant on a wide range of topics. He is, quite simply, the smartest person I know. He is also a clear and thoughtful writer and editor.

But what you may not see evidence of as easily is my father’s tenderness, his kindness, his softness. The experiences of the past two years have brought me evidence time and again how supportive, how giving, how dedicated my parents are, and given me countless opportunities to see the gentle side of my father.

I spoke at the outset about how my life changed when I met Clarke here all those years ago. Almost two years ago my life changed again when I was diagnosed with breast cancer. When I found out I needed chemotherapy as part of my treatment, my parents came to Connecticut for each round. They took care of not only the day-to-day parts of child care, but also the love and nurturing of my children that I could not do in the way I was used to.

On the morning of my second round of chemo, my hair began to come out in clumps. I had been waiting for it to happen, and I was ready. With the same electric clippers I used to cut my two sons’ heads, I went into the garage and started shaving it off. But I could not reach the back properly. I came in the kitchen and asked him to help. With quiet and serious strength, my father finished the job for me.

In my darkest moments, my most painful and distressful ones, it was often my father’s comfort which was the most touching. And when I think of the last 2 years, I am lifted in large part by the love and tender care my father has given to me.

He came to every doctor’s appointment. He changed my bandages after my surgery. And in a true display of love and confidence, he trusted me to make all of the medical decisions myself, and never told me what to do.

Dad demands the best from those around him. He inspires others to want to do their best in his presence. But for those like me who know him well, we know that his serious exterior hides a sensitive and loving father and grandfather. I feel fortunate to have him “on my team” and for the loving relationship we have today now that I am grown. No matter how old I get, though, I will always be his little girl.


My mother’s public and private selves, on the other hand, have always been more congruous than my father’s. My mother is a softie through and through. It’s easy to see why he chose her to be his life partner. In addition to her selfless nature, she is  smart, insightful, funny, supportive, and most of all, patient. My mother and I have a wonderful bond, a great connection. To this day when we say goodbye to each other at the end of a visit, we can’t look each other in the eye because we will both start to cry. Even now you will notice I am carefully avoiding her gaze.

We try to be strong for each other, but we don’t always do a good job. Our biggest problem is that we try to protect one another from harm, from trouble, from stress. My mother has often been overshadowed by my father’s strong presence. But those who have had the gift of her professional advice as a psychologist over the years know that she is a talented therapist and a caring listener. Quite simply, to know my mother is to love her.


My parents have taught me great lessons. About moral standards, about confidence, about sharing the rewards of hard work. These are lessons my husband Clarke and I share with our three children. I never could have dreamed that on that night 17 years ago I would be here today, with my family celebrating this building and the people who made it possible.

Speaking about one’s parents is not hard– my brother Mark and I have been talking about my parents behind their backs for our whole lives.

On the other hand, speaking about one’s parents in their presence is a different story altogether. Rarely are we given the opportunity to compliment them in a public forum while they are still alive. I am thankful to have that opportunity today.

A good education provides a strong foundation for a person’s head and heart. A liberal arts education here at F&M nurtured my whole being, and allowed me to emerge with a stronger sense of self, of who I was in the bigger picture.

Similarly, my parents nurtured both my mind and my soul to instill the importance of education, of giving back to one’s community, and an appreciation for the role that social interaction can have on transforming the individual. The Bonchek College House is a perfect legacy for our family.

In closing, I would like to let you know that the Bonchek College House really is a dream come true for my family. After all of these years, we finally have a group of people consistently spelling our last name correctly…

I love you both.

………………

So, congratulations, Mom and Dad, you made it to 49 years. Here’s to many more.

xoxo

  1. the name of Bonchek College House prior to its renovation []

Is it wrong to be sad on Christmas? (Mourning the life I thought I’d have)

December 24th, 2010 § 4 comments

Originally written December 25, 2008

(three weeks after my salpingo-oophorectomy and two years after my diagnosis of breast cancer. This was actually the first blogpost I ever wrote.)

I’ve only cried once today. That’s not too bad. But the day is not yet done. Today, again, I’m thinking of the things that cancer has taken from me. First, let me say that I am well aware of the blessings I have. I remember them each and every minute of every day. They are what keeps me going, keeps me fighting. But today, again, I’m pulled into what’s gone, what’s irretrievable, what’s changed.

The body parts are gone, of course. My feeling of immortality. Of safety, of security. I’m vulnerable now. And I feel it. Part of me wants to blaze down I-95 at 100 miles an hour because I’ve stared down cancer, so what can touch me now? Taking risks is a popular grief reaction. On the other hand, a part of me wants to curl up in bed and not come out.

Today, on Christmas, when the childlike wonder is all around, I feel like I am watching it from high above me, as it happens TO ME, around me. I smile, I do what I am supposed to do, I play the “Santa game” with my children. I eat delicious food. I gather up the gift wrap strewn about the living room. I pile the presents in the kids’ rooms. I pack their suitcases for their 3:30 a.m. wakeup for their winter vacation. Half my family is leaving me tomorrow. They’ll be back, of course, but they are leaving. And while they are gone I will ponder the sadness that has settled like a cloud since my latest surgery almost a month ago.

I know I’ll be fine… everyone tells me so, as if to will it to be that way. Even in my darkest moments I know it is only temporary. But I am angry at cancer. Angry at the bad twist of fate that makes me unable to travel this year, unable to be myself, unable to shake this feeling that the dark cloud just seems to keep following me, like those creepy paintings in the museum whose eyes seem to follow your every move.

And knowing the other people who are similarly sad today, those who are remembering loved ones lost, and those who are suffering in pain, and those who will head in for more chemo and surgery and therapies before the year is out are also forever changed by the great equalizer of cancer.

To anyone who reads this and thinks it sounds so odd, so foreign– something that happens to “someone else”… I am so happy for you. I am jealous of you. I remember that feeling, but I am almost getting to the point where I am unable to remember it. I never thought it would be me thinking this way, feeling this way. But it is me. And it’s taking a long time to grieve for that life I thought I would have.

Maybe that’s what it is.

I’m in mourning.

I’m mourning the life I thought I would have.

And only time can help that.1

  1. I should say that the surgical menopause had a terrible biochemical effect on me. I went into a deep depression for a few months while my body adjusted to the lack of hormones. I had no idea that would happen; no one had warned me. That surprise, combined with a longer physical recovery than I’d been led to believe I would have, put me in a pretty dark place. []

Cinnamon & sugar pecans

December 23rd, 2010 § 3 comments

So many people on Twitter asked about these pecans… here is the story:

My friend Inga gave me a bag of these a few nights ago. I devoured them.

I have since made my own batch and I just can’t stop eating them. They are delicious, very easy to make, and delectable. They make a great gift too — in a Mason jar or cello bag.

You will need:

1 pound halved pecans

1 cup sugar

1.5 tsp cinnamon

1 tsp salt (if the pecans are salted I would omit additional salt)

1 Tbsp water

1 egg white

Preheat oven to 250 degrees

In a large Ziploc bag combine sugar, cinnamon, and salt. Mix. Set aside.

In a small bowl, combine egg white and water. Mix.

Add water/egg mixture to the dry ingredients in the Ziploc bag. Add pecans. Close the bag and mix all around until the pecans are evenly coated (you want the moisture evenly distributed, the sugar may clump a bit on some pecans more than others).

Once the pecans are coated, spread evenly onto a cookie sheet.

Bake in oven for one hour.

When you remove from the oven, let the mixture cool on the sheet; the mixture still may be a bit wet and this will allow it to firm up. Use spatula to scrape them off the cookie sheet, they will some off in small clumps. (the cookie sheet is easily cleaned by soaking in hot water for a few minutes).

Your end result will look like this:

If You Knew Me

December 22nd, 2010 § 22 comments

If you knew me, you would know I am resilient. Tough, even in the face of the worst news. You would know I rise to the occasion every time. I might break down before, I might break down after– certainly after. But I will meet the challenges at each and every turn.

If you knew me you would know I smiled my way through many of my hard times, lied and smiled and said “fine” when many a person asked, “How are you?”

If you knew me you would know I am not a negative person, that I am not a pity-seeker, nor a martyr. You would know that I just do the best I can, and want to be dignified and strong, but am not in denial.

If you knew me you would know I love to do things for others, moreso than myself. You would know that in this turbulent portion of my life I have done what I can to show others what they mean to me, and how much I appreciate the kindness of strangers… how the smallest encounters can stay with me forever.

If you knew me you would know that I tried my best to make others feel at ease with my cancer. I always took pride in looking the best I could with what I had left. I created outfits around my scarves, and learned how to draw in eyebrows so that it wouldn’t be too obvious I had none. I tried to set a good example for my children, being honest with them about what was happening, loving them as much as I could, and asking the others who loved them to help them feel special and safe.

If you knew me you would know I care for others. When fellow cancer patients have asked to see what reconstruction looks like, I place my pride and embarrassment aside to honor their needs, their fears, their emotions. While some might (and do) hide their illnesses, I cannot. I have chosen for myself, and for my children, to be open about what cancer is, what it does, what price it demands. I believe that being this way will reduce the shame, the fear, and the confusion for them. Nothing has been more important to me than making sure my children understand what is happening and what the scientific reasons are. That honesty does not come at the expense of hope. Of optimism. Of sheer will. To remain mum about these feelings, these thoughts, these explanations of my experience, is to deny my life for the past four years. To do so says the suffering, confusion, and fear were ill-placed. To avoid talking about the reality of the dangers, the problems, the down-times is to not only be in denial but also to assert that my fears are irrational.

If you knew me you would know that I write not because I wallow in darkness, or think negative thoughts all the time. If you knew me you would know I write so that the emotions can be explored, pushed, pulled, twisted, and shared in order for me to be positive, optimistic, and strong for the rest of the world to see. It is the sharing of these ideas on paper, and sometimes reaching the hoped-for connection to people who read them (whether because they resonate with you, move you, educate you, or make you thankful that you have no idea what the cancer experience is) that keeps my words flowing.

If you knew me you would know I’m just a person, doing the best I can with what I’ve got.

Maybe it’s a bum rap, but it’s my bum rap.

It’s my chance to show what I can do:

Just watch me.

Things I know

December 21st, 2010 § 4 comments

1. The phone will ring while I am in the bathroom.
2. I will never be able to get my clothing just right so that I am neither too hot nor too cold for longer than 10 minutes.
3. The line I am standing on will move slower than any other line.
4. My husband will leave the lights on every single time he goes into the garage.
5. I will find one more item of dirty clothing the moment the “add garment” light goes off on the washing machine.
6. I will spend my entire vacation worrying about whether I will make the connecting flight for the return trip home.
7. One of my children will add one more item to his/her Christmas list immediately after I declare I am DONE shopping for the year.
8. I will never be able to read all of the books I want to read.
9. The only sizes left in the pants I will fall in love with will be sizes 00 and 20.
10. Carbohydrates are the key to happiness in life.

What is your list?

Just a word

December 20th, 2010 § 22 comments

Four is just a word. So is three. But once again today I will change one word on the welcome page of my website.

“It has been three years since hearing the words ‘You have cancer,'” the first sentence says.

And now, today, it becomes four.

I think about days like the one four years ago — days that start innocently, normally, benignly. In the hours leading up to the mammogram I wasn’t worried about anything.

I think about the sentence that changed my life.

I think of where I’ve been, where I am, where I am going.

I think of those I’ve met along the way: new friends, doctors, nurses, strangers.

I think of those who have died from cancer and other causes since I was diagnosed.

I think of the progress we’ve made and the distance we have yet to go.

I think of what today might bring, and tomorrow.

And then, in a sudden reversal, I stop myself from thinking too much.

“It’s time to go live my life,” I tell myself. Thinking is good, but only so much.

“It’s time to go live my life,” I tell myself…

Right after I change that one word.



To read about the chronology of my diagnosis, go here.