Everything Changes - The Guide to Young Adult Cancer

Shortly after my diagnosis, I applied for and received scholarship funds to pay for alternative medicine treatments. Living in the Bay Area, my choices were endless: Chinese Medicine, nutritional therapy, energy healing. Practitioners wanted to shove coffee up my ass, have me go on juice fasts, float in healing water pools, select animal totems, and gulp down putrid herbs. They used dirty words like sleep and meditation too.

Alternative medicine is just one more area of cancer care that I’ve had to get savvy about navigating.  It is just as much of an industry as standard cancer care with its own pit falls, winners, and losers.

Walking into an alternative medicine practitioner’s office is a wild card compared to the narrow experience of visiting a traditional doctor’s office. The alternative medicine industry has few standards or regulations (though they could well afford to). Many practitioners are zealous about healing in ways that are not always realistic or are an overreaction to allopathic cancer care. And because many alternative methods depart from science to some degree, they often involve varied emotional, spiritual, and religious components that can be jarring to survivors whose internal worlds might already be in an precarious spin.

I was an avid and educated alternative medicine consumer long before I was diagnosed with cancer, and continue to use it as part of my care. But I don’t talk or write about my personal alternative medicine experiences. I’m not interested in becoming a walking billboard for a lifestyle that I can’t scientifically prove has had an impact on my health, nor do I know if it would be beneficial to the particular disease path of any other patient.

Still, I’m a huge proponent of getting smart about alternative care and wrote in  Everything Changes extensive guidelines for defining your alternative medicine goals, questions to ask a practitioner, and other checklist for evaluating alternative medicine experiences.

My number one tip is that although many forms of alternative medicine use concepts that we cannot rationally understand, you should always still use intelligent, rational thought processes in deciding whether the methodology is right for you and if the practitioner is a trustworthy, educated, experienced, and intelligent person.

Have you used alternative medicine? How did you go about finding a practitioner? What qualities did you look for? Any good stories to share about the winners as well as the wackos?

Check out Everything Changes for a mini-guide on navigating the world of alternative medicine.

I’m glad to be celebrating Passover with my family and getting a reprieve from thinking about healthcare reform.  Waking up in my parents’ house got me thinking a lot about how much I love them and what it’s like dealing with family in general when you’re sick.

I’m going to brag: I’ve got the most close knit, loving, caring, nuclear and extended family I have ever seen outside of shows like Eight is Enough and the Waltons. Still, cancer put temporary stress on some of my family relationships.  I know scores of other young adult cancer patients who have dealt with family issues like: differing medical values, old feuds and hurt feelings rising to the surface, having someone by your side who loves you but is sometimes just a little too close, or handling completely dysfunctional parents or siblings in the midst of treatment.  Here are a few things that worked for me in navigating cancer and family matters:

1. Express how you are feeling and what you needed. This helps when your relatives are rational people (not everyone’s are!)

2. Don’t express to everyone how you are feeling and what you needed. Some relatives have made asinine comments to me and I let it go. You can pick your friends but not your relatives and I know when it’s futile to spend my limited energy trying to get someone to look outside of their bubble into my world. Emotional walls and superficial conversations are sometimes great devices. And remember, just because a family member offers to help you out doesn’t mean you have to accept it.

3. Arrange for alone time. I was damn grateful for the love and support I had, yet I knew I would go stir crazy without a little time to myself in my tiny studio apartment. If your family is from out of town, ask your friends to take them out to a movie or to dinner so you can get some space.  Chances are your family members need a break too.

4. Bring in outsiders. During my first treatment it was just me and my mom. The second time around we mixed it up with my aunt and dad coming out too.  It was great to have friends stop over to be with all of us and to have my Rabbi drop in too.  There was a lot of nervous energy flying around and we loved an outsider to come and divert our attention.

Has illness impacted your relationships with family members? What tips do you have to add to my list of how to manage family relationships during illness?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s  to learn how and why Seth successfully asked a sibling instead of his parents to come take care of him.

Lots of us want to know how the new Healthcare Reform Bill will impact cancer patients. This is the longest post I’ve ever put up on my blog because there’s a lot of info to cover. Still, these are just the highlights – there is so much more to cover and I will be sure to provide updates.

I’m not a policy expert, but was hell bent on learning what I could. I have culled the below information from the Kaiser Family Foundation (KFF), a non-profit, non-partisan healthcare organization; The American Cancer Society’s Cancer Action Network; and from the bill itself.

I will also be talking about health insurance reform and cancer care today on SIRIUS Doctor Radio’s Oncology Show,  1pm EST. Don’t have satellite radio? Neither do I.  But you can still listen to it. Sign up here to listen for free .

A Few Items That Go into Effect The First- Year:

1. New help for some uninsured
People with a medical condition that has left them uninsurable (yep – such as the big C) may be able to enroll in a new federally subsidized insurance program. It will be established within 90 days. It’s not clear exactly how much you the patient would pay as your share, but there are maximum limits so you would not pay more than $5,950 per year for individual (that’s $495/month) or $11,900 per year for a family. Wow, anyone who thought this bill is dishing out free insurance to everyone is clearly wrong!

Some of you may live in states that have High Risk Pool Insurance. This federal program sounds very similar. It is private insurance offered to people with pre-existing conditions. The government pays part and you pay part. I was on a very similar plan in Illinois. The insurance was actually extremely good, Blue Cross PPO and had no limits on the docs I could see.

2. Discounts and free care in Medicare
This is not for us young adult patients, but applies to and is very important for seniors. KFF says: “The approximately 4 million Medicare beneficiaries who hit the so-called ‘doughnut hole’ in the program’s drug plan will get a $250 rebate this year. Next year, their cost of drugs in the coverage gap will go down by 50 percent. Preventive care, such as some types of cancer screening, will be free of co-payments or deductibles starting this year.” This is a very big deal for people like my grandma and Aunts and Uncles who have been hit so hard from being in the doughnut hole. It will also help a lot of seniors to catch their cancer at earlier more treatable stages, which helps reduce the burden on the entire cancer care system.

3. Coverage of kids and young adults
KFF says, “Parents will be allowed to keep their children on their health insurance plan until age 26, unless the child is eligible for coverage through a job. Insurance plans cannot exclude pre-existing medical conditions from coverage for children under age 19, although insurers could still reject those children outright for coverage in the individual market until 2014.” But what if a young adult between 19 - 26 has a pre-existing condition and is currently not covered under their parent’s insurance, will the bill enable them to get on to their parent’s insurance? If so, when does this kick in? I’m still not clear on this one and am waiting to speak to policy analysts about it. I’ll update this post with the clarification as soon as I understand more.

4. Tax credits for businesses
KFF says: “Businesses with fewer than 25 employees and average wages of less than $50,000 could qualify for a tax credit of up to 35 percent of the cost of their premiums.” Young adults are often work entry-level jobs that don’t offer health insurance. This provision should help increase the number of jobs available to us that come with benefits.

5. Changes to lifetime and annual insurance limits
KFF says, “All existing insurance plans will be barred from imposing lifetime caps on coverage.” What’s this mean? Let’s say that currently your insurance states that over the course of your entire life they will cover no more than $500,000. Cancer patients can rack up a bill that size in six months and then are left with no coverage at all. This bill would make it so insurance companies cannot limit the dollar amount of care that you can receive over a life time.

Restrictions will also be placed on annual limits on coverage. Similar to life time limits, under the bill, insurance companies also cannot place a restriction on how much money they will pay for your coverage in a given year.

6. Insurers can no longer cancel insurance retroactively
What does this mean? Let’s look at this scenario: You get diagnosed with cancer and have health insurance. Great you’re covered. Well in the past, insurance companies could say, “You know what, you went to your doctor’s two years ago because you stubbed your toe and thought it was broken. We’ve suddenly decided that your stubbed toe is a pre-existing condition, so we are going to retroactively cancel your insurance because of this ailment and we won’t cover your cancer care or any other care for that matter.” This bill will make it illegal for insurance companies to do that. And believe me, this happens A LOT to cancer patients.

7. Insurance companies have to spend more money on our care
KFF says, “Insurers must report how much they spend on medical care versus administrative costs.” It used to be that 90% of what you paid to insurance companies for your health insurance was actually used to cover your care. This number has now dropped to 80% because instead of spending more on your cancer care, insurance companies are spending more on advertising, slick brochures, golf outings, and CEO bonuses. The bill makes it such that if your insurance spends more than 15% of your premium on non-medical costs, they will have to give you a rebate.  Sorry insurance guys, no more box seats to theYankees.

8. Other Goodies for Cancer Patients
Here are just a few other goodies I noticed in the bill that will impact cancer patients, though these do not all kick in immediately:

* Health insurance companies cannot deny cancer care costs if you are on a clinical trial. I need more clarification on the details and effective dates of this one. (Did you even know cancer patients were being caught in this double bind? It’s terrible not just for patients whose bills were not being covered, but it screwed all of us because it discouraged patients from participating in clinical trials that greatly contribute to new scientific discoveries to a cure cancer and improve quality of life for survivors.)

* Funding for oral cancer awareness campaign. Oral cancer is spiking in young adults.

* The EARLY act is included in the bill! This is the act that provides awareness and education about young adult breast cancer.

* Funding for “qualifying therapeutic discovery programs” within 60-days of the bill passing. Cancer is listed in this section meaning more specific, directed funding for cancer research.

* Grants and other initiatives to improve med students’ and doctors’ understanding of pain assessment and management. It also supports a pain care research and reporting.

* Insurance companies must explain their benefits and packages in a streamlined chart that will allow you to shop for insurance by making apples-to-apples comparisons.

Stay tuned for upcoming posts where cancer patient Rebecca MacKenzie explains healthcare exchanges, we look at medicare and young adults, and delve into other topics of the bill and how they impact your cancer care.

Let me know if this post was helpful and if you have any additional insights on how this bill will help cancer patients.

For more information on financial assistance for cancer patients, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Thanks to all who read this email when I posted it the morning of the historic healthcare reform vote.  So many of you sent me emails telling me you made calls.  Your work paid off!

My husband Shannon and I were both on the evening news last night talking about the need for healthcare reform and young adult cancer.

Are you tired of me posting, writing, and speaking about the healthcare reform bill?  I am. But too bad because cancer is a dead horse that needs beating and by passing healthcare reform and eliminating pre-existing conditions clauses, we will prevent thousands of cancer deaths.  The bill ain’t perfect, but it is still  likely the most historic and worthy bill of my lifetime.

Our Congress woman has been a long supporter of the bill but we knew we could make a difference by trying to target congress people other than our own. We were interviewed at a healthcare rally in a very conservative district, but the fight was successful. The congress woman issued an official press release saying she will vote yes!

The word from behind the scenes is that any one in favor of health reform needs to continue to do the following up until the time of the vote on Sunday late afternoon:

1. Keep calling congress!

2. It does not matter if your representative has already decided yes. Call others who have not decided.

3. Call the list of people below, tell them politely that you are a concerned citizen (cancer patient?), you are in favor of healthcare reform, you are not in their district but the eyes of the country are on them and their vote directly impacts you.

The last ten years of my life have been so impacted by cancer and health insurance issues. I am taking all of my anger and exhaustion from the experience to try to turn it into something good for the next cancer patients who will follow in my footsteps. It would mean the world to me if you would do the same. Let the calling begin!

Lots of love,

Kairol

Brian Baird – Washington (Vancouver, Olympia) - (202) 225-3536

Paul Kanjorski – Pennsylvania (Wilkes-Barre, Scranton, Mount Pocono) - (570) 496-1011

John Tanner – Tennessee (Union City, Jackson, Millington) - 202-225-4714

Earl Pomeroy – North Dakota (Bismarck, Fargo) - (202) 225-2611

Lincoln Davis – Tennessee (Columbia, Jamestown, Rockwood) - 202.225.6831

Mike Michaud – Maine (Bangor, Lewiston, Presque Isle, Waterville) - 202-225-6306

Bill Foster – Illinois (Batavia, Dixon, Geneseo) - (202) 225-2976

Kathy Dahlkemper – Pennsylvania (Erie) - (202) 225-5406

Chris Carney – Pennsylvania (Clarks Summit, Shamokin, Williamsport) - (202) 225-3731 Chris Carney just changed his vote to yes!  Thanks Rep Carney for supporting young adults with cancer!

Steve Driehaus – Ohio (Cincinnati) - (202) 225-2216

Stephen Lynch – Massachusetts (Brockton, Boston) - 202-225-8273

Rick Boucher – Virginia (Abingdon, Pulaski, Big Stone Gap) - 202-225-3861

Loretta Sanchez – California (Garden Grove) - (202) 225-2965

Dan Lipinski – Illinois (LaGrange, Oak Lawn, Chicago’s southwest side) - (202) 225 – 5701

Joe Donnelly – Indiana (South Bend, LaPorte, Michigan City, Kokomo) - (202) 225-3915

Marion Berry – Arkansas (Jonesboro, Cabot, Mountain Home) - (202) 225-4076

Jerry Costello – Illinois (Carbondale, Belleville, E. St. Louis, Granite City, Chester) - (202) 225-5661

Nick Rahall – West Virginia (Beckley, Bluefield, Huntington, Logan) - (202) 225-3452

Solomon Ortiz – Texas (Corpus Christi, Brownsville) – (202) 225-7742

Thanks Congressman Ortiz for declaring that you have changed your mind and will vote YES!

Alan Mollohan – West Virginia (Morgantown, Wheeling, Clarksburg, Parkersburg) - (202) 225-4172

Sometimes the phrase “life or death” is not a cliché. Even more surprising than the words “you have cancer” were the words from the secretary when I tried to make a appointment for a second opinion: “You have no insurance.”

I left my job three weeks prior to my diagnosis to transition to a new workplace. COBRA would have carried my insurance through, but my former employer apparently forgot to submit the paperwork. I was 27, had a sudden pre-existing condition, and no health coverage. The government, insurance companies, my former employer – none of them were willing to pick up the tab for my cancer care.

I needed an operation to remove my thyroid and 30 tumors that were laced throughout my neck and shoulder. There were no healing candle lit baths, no journaling, no “you can fight this cancer” phone calls with friends, and no doctors visits during my first month of cancer. Instead I spent 40 hours a week on the phone with the national COBRAServe headquarters. When the phones were closed I spent my time strategizing back up plans. (Would I be able to fly to another country for care?)

I was raised in an extremely patriotic family of both democrats and republicans. The common theme was not about political parties, but about our love for a great country. But, when did this country go so wrong that I might actually die because nobody would cover me, a hardworking 20-something cancer patient?

I lied my butt off to the government and finally obtained insurance that allowed me to receive surgery. (I don’t recommend this to anyone. It was a horrible being wheeled into surgery knowing that my house of insurance cards could tumble at any minute.) Nine years later I am still living with thyroid cancer. I have had scans, more surgery and radioactive iodine treatments. I have likely spent more time on the phone arguing for coverage and fighting for insurance to pay my claims than I have spent in doctors’ offices.

Nothing has felt so important to me as the House of Representatives passing the healthcare reform bill on Sunday. But I’m not interested in fighting with teabaggers, nor in trying to prove the benefits of healthcare reform to people who don’t already see why it’s so necessary. Instead, I am writing this post to the majority of Americans, people who know health insurance reform is worth ten minutes of your time today and on Saturday. Put down your iPhone apps, your facebooking, your twittering, your blogging, and pick up the phone and call, call, call your congress person. Use this link to find the phone number of your representative and politely reiterate to them how important healthcare reform is and they should vote yes. I know our country can do better than where we are right now. I’m counting on you.


Please leave a comment letting me know you have called your congress person today and will do it again tomorrow! Please forward this post to others.

Mac and cheese? Plain pasta? M & M’s? I’d love to create a list of tips based on what you did and didn’t want to eat during cancer treatment and why. The why part is particularly interesting because it may help other young adult cancer patients (and older patients too!) figure out what to eat while they’re addressing similar food challenges.

I recently read a smart theory from cookbook author Rebecca Katz. When your taste buds are whacked from treatment you can balance the taste of your food by adjusting these ingredients: Fat, Acid, Salty, Sweet (FASS). She recommends if food is tasting like cardboard add a pinch of sea salt or a squeeze of lemon. After all, tortilla chips are just cardboard with a pinch of salt and squeeze of lime, and I can eat a whole bag in one sitting.

Here’s my cancer treatment and food low down:

Treatment: Radioactive Iodine Treatment - low iodine diet
Favorite Food: Low-iodine homemade bread, avocado, no-iodine salt, lime
Why: My energy was low and this took so little effort to make. (Thanks to my friend Sean Feit who baked and delivered iodine free bread to my apartment regularly!) I could also toss bread slices, an avocado, knife, salt and lime in my bag and have food on the go. Sounds like a pain in the ass to lug around but it beats starving. Plus, on the ultra-restrictive low-iodine diet, avocados were one of the few veggies (okay they’re a fruit) that were filling and put some meat on my bones! I also recommend eating it on a pretty blue plate - it looks fantastic against the avocado and you can trick yourself into thinking you are eating a gourmet meal.

Leave a comment with your type of treatment, what foods you liked to eat, and why they worked for you. Let’s get 25 responses so that these comments can serve as a mini-food guide for others going through treatment.

I’m a total cookbook slut and adore Rebecca’s new book ‘The Cancer Fighting Kitchen’. Gorgeous photos, great recipes, super practical info. Nominated for a cookbook award among the ranks of general cookbooks by authors like the food editor of Martha Stewart Living, Vote for it here!

A few days ago I had a fever. Sometimes simple aches and pains catapult me into an irrational headspace where I’m reminded of treatment, begin to sweat bullets, tremble, and my heart races. (I know I’m not alone in this as many of you weighed in on similar experiences in my post Scared of Every Little Ache and Pain?)

When I’m in this snowballing panic mode it helps to talk to someone about my fears. Often it’s my mom, my husband, or a friend. But the other night I wanted to talk to an insider. So I called a cancer hot line. I didn’t care if the person on the other end was a patient, professional, or a caring volunteer. It just felt cool calling someone whose whole goal was to be awake in the middle of the night waiting for a call like mine.

I described to the woman what was going on for me. Her reply: “Count your blessings. Did you say you have a husband? You should be so grateful you have a husband. Do you know how lucky you are? Just count your blessings and you’ll see things aren’t so bad.”

She was right, my panic wasn’t quite so bad anymore. Instead, it was replaced by a flood of anger, a desire to reach through the phone and smack her. I hung up and called two other hot lines. Both told me I needed to see a therapist. That was all they had to say. Seeing a therapist can be very helpful for some people at the right time. But it actually isn’t what I need now, nor was it what I needed in that moment. What I wanted was to be deeply listened to, to feel validated, to have confirmation that was I was experiencing was hard yet understandable. I didn’t want my experience to pathologized, erased, or negated with positive thinking BS.

I have researched loads of cancer community resources, but not call-in hot lines. From my experience there certainly is a dearth of good ones.

Who do you call when you are freaking out in the middle of the night? What do you want to hear from them? Have you ever called a cancer hot line? Do you have any good ones you can recommend?

Read Everything Changes to learn about the crafty places and unusual people that patients have turned to for stellar support.