A practical guide to dealing with a cancer diagnosis #1

Friday, November 7, 2014

[In an attempt to capture everything I've conveyed about caregiving in the cancer context, I broke the process down into five categories: 1) the medical, 2) the financial, 3) the logistical, 4) the social, and 5) the emotional.  I tried to write about all five in one post, but never could finish it up, so I'm going to post these in a series.  This post focuses on the medical and financial aspects.]

Treatment for leukemia is a long process.  We just celebrated (okay, we didn't really celebrate) the two-year mark, and we have another six months to go on chemo.   The downside is that it's a LONG process, the upshot is that I have learned a lot about how to handle it all in the past two years.  Does this mean I'll handle it well this time?  Who knows, every round comes with its own surprises.  I think my odds of success have been increasing, though.

The following is a practical guide for caregivers prepping to go through it.  It is not scientific, it is based on my own experience:

The Medical:
1. I am constantly amazed by two things when it comes to cancer treatment: the first is the amazing scientific advances--what humans have learned about our cells and how to change it is truly amazing.  Many days I am in awe of the medical establishment.  Equally amazing is the lack of detail-orientedness at every cancer center we've been--and we've been to some of the best.  From missed lab tests to attempting to administer a flu shot to an allergic patient, a clearly marked allergic patient.  You have to be your own advocate and you have to hold your treatment providers to the plan they intended to execute.  If you aren't on your game, the game-plan will not be executed properly.  My best advice is to contact LiveStrong and get their big patient binder.  Open up the calendar and write down every test any doctor mentions and the date it's supposed to occur.  Write down all the medicines prescribed.  Write down all of the discussed contingency plans and options.  Keep the binder with you anytime you walk into a hospital and don't be afraid to question your provider when the game-plan you hear on Thursday doesn't match what you were told Wednesday.  These are big treatment centers and the providers are treating lots of patients.  They need to be reminded about the specifics of your loved-one's disease.

2. Understand your treatment plan.  Oncologists walk faster than any category of human beings I've ever seen.  They pop into the room and never take their eyes of the doorway.  It's like they just dined and ditched and are about to be caught.  Call the oncologist back into the room, tell them to slow down while you think a minute, and ask them your entire list of questions.  Make sure you understand what they told you and make sure it makes sense to you.  There is no reward here for taking the path of least resistance.

3.  Get a second opinion.  This applies more toward the beginning and at any major decision-branch in the treatment.  It's a pain.  It feels impossible to travel while your loved-one is so sick.  But, cancer is life and death.  Every doctor we've met has found something important that the others missed.

4.  Try to get your loved-one to be honest about the side-effects they're experiencing.  The doctors and pharmacists will come in with a chemo calendar and tell you it's a standardized plan, but chemo regimens are not one-size fits all.  It'll get adjusted over time.  The doctors are balancing different risks and so it's important that they know your loved-one had acute chest pain--they need to test for that pulmonary embolism and the answer to that test matters.

5. Making decisions about treatment: One of the most terrifying parts of A's experience was when the doctor told us he didn't have any advice as to whether or not A should receive a bone marrow transplant.  The doctor basically said, well, I don't know what's going to work best--it's an option that comes with certain risks.  But, in our case he didn't have a recommendation.  "The transplant team was equally split," he said.  In another conversation he added, "the hospital makes a lot of money from transplants" without any further explanation or comment.  That's one thing to be aware of--the hospitals and the doctors have interests and in borderline cases your treatment providers may or may not consider those.  Knowing that doesn't help you much.  My best advice is to try to seek second opinions from folks outside of the hospital who will do the actual procedure to make sure they have no skin in the game.  Also, ask social workers and folks from cancer support groups to connect you with others who have had to make the same decision and find out how they made their choice.

The Financial:
1. There is some sticker shock associated with cancer treatment.  The last thing I wanted at the end of a long day working and then at the hospital was to come home to my empty apartment and open medical bills.  It has to be done.  Know that you will not make it through cancer treatment without a mistake.  Familiarize yourself with the details of your plan and get used to calling your insurance company.  I've heard that in cases like cancer, you can request to have one person consistently handle your case.  Given the amount of run around you're probably going to get, I might set that up.

2. Even after you know the details of your insurance plan, stay on top of it.  This was something that I delegated to my mother during A's initial diagnosis, but we've taken it over as time has progressed.  If you can delegate this aspect of care to someone, I'd absolutely do it.  I guarantee that you will not make it through your cancer treatment without billing errors that you'll want to challenge.  You may be able to set up one contact at your insurance company, which can be very helpful as every time I call the insurance company they contradict whatever they said the last time I called.  Watch out for pre-authorization problems--you don't want to be trying to get pre-approval at 4 p.m. on a Friday for something your loved one needs done immediately, you'll spend the whole weekend beating yourself up about your inevitable failure and it's unlikely you'll get it solved first thing Monday.

3. Accept that you are going to spend than whatever the out-of-pocket max is on your plan and start trying to incorporate that into your budget.

4. If you have a diagnosis like leukemia, you automatically qualify for social security disability benefits, but it takes a long time for the paperwork to set in.  Get that started immediately if your loved-one will not be able to work during treatment.  With respect to work, see if there is any way your loved one can work from home, work from the hospital--the longer they can stay employed the better.

5.  If your loved one cannot work and takes disability, start looking into your health insurance options pretty quickly.  If they lose coverage, they should be able to be on your plan, but you have a tight window to obtain coverage.  That coverage may be ticking away while you're in the hospital and your employer isn't going to be incentivized to bend rules to add a cancer-patient into their group.  Talk with social workers about all of the options available if you're on disability.  Don't delay on this.  Note that some of these insurance changes may need to be made well before you ever see a bill.

6. Cancer takes a heavy financial toll on almost everyone.  It's normal to feel overwhelmed.  If you're feeling crushed under the weight of the medical bills, talk to a social worker at the hospital about different resources out there.  Sometimes hospitals will work to charge you less for treatment and social workers can also direct you to resources.  The American Cancer Society and other groups will pay utility bills, rent, and all kinds of bills for cancer patients who are struggling to make ends meet in the face of the millions of dollars in medical bills.

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