Everything Changes - The Guide to Young Adult Cancer

Did you hire a babysitter or use alternative medicine during cancer treatment?  Did you have to work during treatment?  Do you skip doctors appointments?  Have you lived your life larger after cancer by traveling or switching to a new career you love?  The answer to these questions hinges largely on money.  So why the hell do we never talk about money in the cancer community?

As a cancer patient I was damn glad to receive state disability, alternative medicine care at a clinic for low-income women, and pro-bono legal help. I talk openly about these experiences because I wanted people to know these resources exist. But I realize that everyone has different comfort levels in how much they talk about money.

In my travels interviewing young adult cancer patients, I spoke a real mix of people, some of whom were very quiet about cancer and finances. I talked to one woman who kept secret from all her friends that she was receiving government assistance and other forms of financial aide. I met other young adult cancer patients who broadcast loudly through the grapevine their need for money, like Seth who had an art auction and benefit performance to raise rent money and pay  basic living expenses during treatment. (I recently learned about a program called Give Forward that sets up personal web pages so patients can accept cash and credit card donations from friends and family to help with medical needs.)

When I returned to work after treatment I was not living my dreamy life as a writer.  I was working a crappy, low-paying job that left me creatively void.  The only reason I have been able to write Everything Changes and maintain this blog is because I’m frugal as hell (I was in my late 20s before I ever bought a beverage in a coffee shop or purchased a CD!), I didn’t have medical debt - for which I am grateful on a daily basis, and I got married and now have more flexibility as part of a double income household.  (In my book I refer to people like me as the married cancer bitches.)

I have it good.  And know that isn’t everyone’s story.  I often hear the line that if  you wish for something hard enough you can make it happen.  Yeah, well not in this country. Not with this  medical system.  Not with cancer.

How much has money impacted your cancer experience? Have you ever received assistance or would you ask for help from friends or family?  What is the most frugal maneuver you’ve ever made?

For more stories about swinging cancer and money, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

For some people, cancer has made them live larger. I’m not one of those people.  Whether I’m traveling for work, to see my out-of-state doc, visit family, or on vacation, cancer has made me a more neurotic traveler.

At first I fought the image of me not being the spontaneous, carefree, adventuresome woman I used to be.  But then I realized that’s all just an image.  Who cares? My life is best when I adapt to my challenges and can be myself.  (And frankly, jet setters and world travelers are some of the least interesting people I tend to meet!)

My first year and a half of traveling to New York for doctor appointments, I tried to make a gloomy reason for visiting New York more fun and productive. I jammed in media appearances, meetings with my agent and editor, dinners with friends, and museums and performances.  But I wised up this past December: I was in and out in for my doc appointment in less than 48 hours, with one short radio show and a lunch meeting.  The stress of waiting for big test results was much easier with a pared down schedule.  Does it stink to miss out on the fun of New York?  Yes, but boo-hoo, sometimes life with cancer isn’t sparkling fun.

Pat Galen Steer, who comments often on this blog, found a way to make her monthly medical trips easier.  She dedicated one backpack and lightweight rolling bag for her medical trips in which stored an all-seasons wardrobe.  Upon returning from her med-trip she’d do laundry, repack the bag, clean out and organize her medical notes, and replenish her toiletries, makeup, and ostomy supplies.  This system reduced her monthly travel to-do list and made the trek smoother and less worrisome.

The new traveler in me feels 67-years-old instead of 37.  Before cancer, I camped, traveled on $15/day, thrived on the adventure of winging it, and had a cool collection of pictures featuring me on tropical mountain tops. Now when I go on vacation I want a comfortable mattress, to eat in restaurants I know are super clean and safe, and on beach trips get some shelter from the sun (reducing my risk of skin cancer). So I vacation much less often but do it in a bit higher style - and with an extra supply of prescription drugs tucked away in my carry on.

Has travel changed since your illness?  Do finances/ medical debt. impact your traveling? What are some of your best and worst traveling with illness stories?  What tips do you have for making traveling with illness go more smoothly?

Read Everything Changes, to learn about discounted and free places to say for medical travel.

One of the coolest feelings is getting emails from patients who say, “I saw you speak, or I read your book, and you totally convinced me to get super aggressive with my doctor, or hospital, or employer, and it worked!”

Managing my own illness has at times felt lonely and defeating.  When I’m crying on the phone with a receptionist trying to get a sooner appointment, or flat like a butterfly pinned down to an exam table, it’s easy to feel at the mercy of the system.  That’s why it’s incredibly important for me to hear and tell success stories about being a pro-active patient. Here’s one:

Six hospital personnel were hovering over a table looking down at my neck: pathologists, radiologists, nurses, and fellows.  They were preparing to do multiple ultrasound guided needle biopsies of deep nodes. Before they began, I sat up and said: “Before you start with the needles, could you first ultrasound my neck and compare it with the images from my previous ultrasound? If the nodes have shrunk significantly is it possible this is not cancer but swollen glands instead?”

They agreed with my suggestion, performed the ultrasound, made a comparison, and conference called my doctors.  The nodes had shrunk considerably and did not merit biopsies. By speaking up, I avoided the pain of the procedure, anxiety of waiting for results, and saved my insurance company thousands of dollars.

I’m not a magician.  I cannot pull insurance out of a hat or make my tumors vanish. But I can catch record keeping errors, reduce my risk of infection by asking my docs to wash their hands, and speak up when I’m having logical thoughts about my health that don’t jive with the care I’m getting.  Forget the power of positive thinking.  I’m about the power of positive, smart, and aggressive action.

Tell me your success stories - even simple ones - about being a proactive patient so other reader can be inspired to use your tricks. What helped you get an appointment, obtain medical records, change your course of treatment, gain approval from an insurance company, or make your care more efficient?

Learn more savvy patient tricks in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I love weddings (almost obsessively so) and am thrilled for anyone who is currently engaged.  But, sometimes it is damn hard dealing with wedding planning season when you’ve got cancer or a chronic illness.

Being single with cancer and no date at my brother’s wedding was hard.  I was in the midst of breaking up with a guy who couldn’t say the word “cancer”.  I was so happy for my brother and didn’t want to feel like a self-pitying sister or that I was detracting from his moment.  I tried to keep my mouth shut about it all.  I also dreaded all of the guests telling me how grrrreat I looked in that wacko-cancer-pity-adoration way.  But for all of my angst leading up to it, I decided to go totally solo, not even bring a friend date and it was the most fun wedding I’ve been to.

When it rolled around to my own wedding a few years later, I thought hard about whether at I would thank the people in my life who have been there for me during “hard times” (code words for “cancer”.)  I decided to thank people for other things, that cancer didn’t belong at my wedding.  But sometimes it isn’t possible to compartmentalize life like that; life just bleeds on through.   It’s challenging to hide baldness at a wedding or scars decorating your body.  And you can’t hide your absence at a wedding because you were too sick to go.

It’s hard to transition from staring death in the face to embracing unlimited love. Take for example Dana, a leukemia patient in my book Everything Changes, who said: “At my rehearsal dinner, I went into a bathroom stall and sobbed my eyes out. I could not believe I was at my own rehearsal dinner after everything that I went through. My friend came into the stall and sat with me. I just needed her to be there while I got it all out. It was like I suppressed all of these feelings because they were too big for my brain. It was like, ‘Look at where I’m at, I’m alive, I’ve met this man.’ I had to let them out.”

Wedding budgets, gifts, puking on your bouquet.  As a bride, groom, member of the wedding, or just a guest, what are some of the challenges that you’ve faced because of your  illness?  Do you have any weddings coming up this year?

Read about being engaged with cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

After going throuugh cancer treatment, you’d think that the small aches and pains of life - like having “the trots” as my grandmother would say - are no big deal.  Not for me.  Now, when I feel even the smallest pain, I flip out.

A few weeks before one of my big scans, I had a horrible upset stomach probably from something I ate.  I was on the toilet for hours in total panic mode: Sweat rained off my body onto the bathroom floor.  I was shaking so badly my feet sounded like they were tap dancing.  Logic left my mind and I felt like I was going through treatment all over again.

I try to go on the defensive at the first sign of an ache or pain.  I fight against wondering if my upset stomach is a long-term side effects surfacing or a secondary form of cancer.  I get logical telling myself that if I had a new form of cancer or a recurrence, I would probably have repeated symptoms not an isolated incident.

I pop a Tylenol, Advil, Pepto at the first sign of feeling sick.  If I squash the symptoms of small aches and pains, it helps to I curb my fears.  Prior to cancer I was little miss natural-homeopath.  I never even took Tylenol for fevers or headaches.  Now, I figure that after swallowing two enormous doses of radioactive iodine, my body probably considers over-the-counter drugs to be a walk in the park.

When I’m suddenly hit with a harsh stomach bug or I spike a fever, it’s xanax time.  It chills me out and keeps me from going to that illogical place of fear.  And I also try to talk to someone who gets it and isn’t going to make me feel like the hypochondriac I am.  I want someone soothing who is going to say, “Of course this is scary stuff.  After all, you’ve had cancer.”

Do you ever suffer from irrational fears when you feel aches and pains?  Where does your mind go and how do you bring it back?

To learn more about cancer, chronic illness, and post-traumatic stress, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Sifting through the emotional, administrative, and financial trauma of dealing with illness, being sick ultimately all comes back to the body.  So for this installment of Patients for A Moment, we asked that bloggers submit posts about the down and dirty physical world of their disease.

Ever pulled a serious MacGyver providing your own home healthcare with saline solution and a turkey baster?  Duncan Cross has and writes about it in on the Duncan Cross post Duncan 1, Hospital 0.

“I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…”  Need I say more about Leslie Rott’s post The Ultimate Coyote Ugly on her ever fantastic blog Getting Closer to Myself.

Most glossy doctors office disease brochures describe only the short list of limitations and side effects.  In Rheumatoid Arthritis:Disability Makes Things Difficult, RA Warrior Kelly Young lists the longer version of things you can’t do when your hands don’t work. It’s shocking.

The flip side of limitation is the day dreamy, anything goes fantasy life of that Fibro Mom creates on Fibro World in her Top 10 Things in a Perfect Fibromyalgia World.

From their nose to yours? School your co-workers in why they need to stay home when they’re sick with this  excellent primer Thank You, H1N1 Swine Flu from 21 year leukemia survivor Selena of Oh My Aches and Pains!

A shovel, knapsack, bowl of candy and diaper ointment. Not just for cancer patients, check out my post from last week Your 5 Must-Have Items from Surgery & Treatment Time?, along with over 200 reader suggestions.

Limitations, daydreams, MacGyver stories?  Leave’em in the comment section.  I’d love to hear.

Most people are psyched to play match maker between cancer patients, thinking if they know someone else with your kind of cancer, of course you’ll hit it off and become friends.  This is when phone numbers are given and the match making begins.

In Everything Changes, I wrote: “In my first six months of living with cancer, I received enough phone numbers of friends of friends with cancer to fill a small Rolodex. Picking up the phone and calling a complete stranger, twice my age, with cancer was just as appealing to me as calling the nice, single Jewish boy whose mother had met my mother at synagogue. It wasn’t going to happen.”

Sure, now I love talking to strangers about cancer, but I waited to do it when the time was right for me, and with patients whose values interested me.  Just because two people have cancer does not mean they have compatible values around medicine, treatment, or emotional styles and religious ways of coping.  Plus, I want to feel connected to the person about something other than cancer: I’ve met plenty of cancer patients who are just as crazy or unappealing as anyone else in the general public.  It’s all very much like internet dating.

I like Imerman Angels, an organization that matches “fighters” with “survivors”. They’re great yentas, taking into account things like if you’re a college student, parent, young adult, and the stage of your disease.  And, it can be nice to find someone to talk to because you want to, not because your very well meaning neighbor thinks you need it.

I love it when my phone number is given out to newly diagnosed patients.  I hope they will call, but I never expect them to.  I totally get that most people aren’t into the dial-a-stranger routine.

Did people try to do cancer match making with you? How did it go?  Do you like having direct contact with other patients or prefer more anonymous  communication, like reading blogs? What’s match making like if you have a rare form of cancer?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about my cancer conversations with complete strangers.

It’s frustrating and soul corroding when friends, family members, co-workers, even doctors shower you with stupid comments about your disease.    And it’s even worse to think of the perfect comeback three hours later when you are laying in bed.  Venting online with like minded patients about how we’d like to smack these people is all fine and dandy. But, I’m actually more interested in realistic responses that will make us feel better.

I’ve started trying to turn these situations around. Here’s an example: A friend recently said: “You gotta think positively and it will make your test results come out okay.”  I replied in a really nice tone: “I know, I hope everything is okay.  But did you know that studies show positive thinking doesn’t really impact cancer growth? I guess I usually just let myself feel nervous and then deal with the results when I get them.” She was surprised to learn this piece of information, became even more interested in what I was actually feeling and going through, and we had a cool conversation. So, here’s what I’ve learned to include in my comebacks.  I know this all may sounds a bit therapisty - so forgive me:

I get friendly instead of confrontational. Being a smart-ass only shuts the door. I think of my response as an invitation to more conversation, rather than a statement that will put someone in their place.

I try to teach them one thing about my life, my illness, or my reality. Not a lecture, but just one little nugget of info that helps them better understand what my life is actually like.

I start by saying something simple like: “Actually, that’s interesting I have the opposite experience…”

Does this work with everyone?  No.  There are some people I don’t have the energy or desire to deal with.  With these folks, I just note in my head, “This person’s so wacko I don’t really care what they have to say.”

What are there smartest, most useful responses that you’ve said (or could have said) to people’s stupid comments?  Am I full of it or do you think my ideas are actually applicable to situations you find yourself in?

Want to learn more especially about how to communicate with your docs?  Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I got good news at my doctor appointment three weeks ago.  I feel deeply relieved for the first time in almost a decade.  I’m rid of the 2 ton weight that has long been chained to my shoulders and I’ve stopped calling my mom with 4AM panic attacks.

In Everything Changes, I interviewed Nora, a lymphoma patient, who was talking about marking her progress during chemo: “ I don’t know if I ever really celebrated any of my good news.  Every time I get a good report I always feel like the hammer has just been held up a little while longer.  So it’s hard to celebrate. It’s just realism actually. I’m at higher risk for infertility, heart disease, lung cancer, leukemia.”

Feeling the relief of my recent good news is a first for me.  In nine years of cancer, I’ve rarely received news that merits celebration. Plus, as an uber educated patient, when I received somewhat good news, I understood that it often had a less favorable side to it. Also, I never wanted to build up my happiness only to have it shot down later. I’ll admit, I’m a pretty realistic person.  Meet my family and you’ll understand.  We’re loving gregarious folks, but looking on the bright side is not our forte.

Even with my recent news it has taken me a while to be able to unwind and feel it. The anxiety of waiting for scans and test results is like living in another universe. I need a reentry period. I cannot just flip a switch from scared shitless to clinking champagne glasses.

I know many patients who have worse prognoses than mine and have would have killed for my news even when it wasn’t all good.  During those times when I wasn’t able to celebrate, I was still aware of how fortunate I was.  I’m not big on guilt or enforced gratitude.  When I couldn’t celebrate my good news, I never forced myself to by comparing myself to others.  I’m always best off just being me.

I’m happy today, not because I’m a positive thinker or am trying to make the most of every moment, but because I’ve finally received news that warrants celebration.  I know I could push it away out of fear.  But this time, it actually makes sense to embrace it.

Have you ever received good news since your diagnosis? Do you have a hard time celebrating good news?

Learn more about how other patients react to news from their docs in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.