The Cost of Cancer

It's been great being at home for over a week now.  I've been getting some good sleep, spending lots of quality time with the family, and even getting out and about to see some friends in town.  My return to the hospital is scheduled for Monday to begin the first round of consolidation.  I've been trying not to think too much about my return even though it's only for five days, I just want to enjoy the time off.  I'll return to more frequent updates next week when I'm back undergoing treatment.  For now, here is the original text I wrote as an article for a local newspaper about the cost of cancer.  My hope is that you'll all look over your own coverage and assess if there are holes to plug.  In summary, you'll want to have six months of income set aside (good luck with that one), plus an emergency fund that would cover your maximum out of pocket expenditures for a year (see your health insurance policy for this stat).  You may also want to take the extra step of disability insurance if you don't have that through your work.  Aflac or similar to supplement lost income which is the real potential threat in any long-term illness.

The Cost of Cancer – Published in The Stuart News, February 13, 2014

by Brian Duncanson

Since my Leukemia diagnosis three weeks ago, one of the issues on my family’s mind has been the overall cost of the illness. A large, unplanned demand on our finances could be devastating. After several weeks of living with cancer and doing some research, the scope of the financial impact is just starting to come to light. The three big hitters are; direct health care costs, loss of income, and out of pocket expenses.

Health Insurance

Fortunately, my family does have a health insurance policy. However, both my wife and I are small business owners, so we purchased a major medical plan directly through Florida Blue to cover us and our three children. Cancer treatments qualify as a major medical, but we have a high deductible of $5,000. After the deductible, we have co-pays that kick in for certain categories of covered medical expenses. There is a defined annual cap of total out of pocket expenses of $10,000, so our upward exposure on covered medical expenses should be capped here. The open questions remain; how many years will treatments span? And, will all costs continue to qualify for coverage? Check your policy for an annual out of pocket maximum.

Patients facing cancer without insurance face more uncertainty. They can benefit from the Affordable Care Act because they can still acquire a policy after diagnosis.  See healthcare.gov for more information.

Loss of income

The next area of concern, and potentially the most devastating, is loss of income for a working person. As a cancer patient you can apply for the Family and Medical Leave Act (FMLA), but this only guarantees your job position for 12 weeks. First, 12 weeks can be a very short amount of time in a cancer patient’s treatment. Secondly, it does nothing to guarantee your salary.

I am extremely fortunate that I have a desk job and work from home on my computer and phone. Since I have been feeling well during my treatment, I transferred my office from my home to my hospital room. But for most this is not a reality.  The income loss would be significant. 

My wife is a physical therapist; she would be completely unable to work, and the practice that she’s worked so hard to build over the last few years would vanish.  This is where a short-term disability insurance policy like Aflac to supplement income could be handy. 

During my treatments, my wife has been unwilling to accept as many new patients so that she can keep her schedule open to visit me. So besides the patient income, the spouse’s income can diminish in response to additional care giver duties.  Income loss can quickly skyrocket from $0 to $100,000+ in short order and force a huge financial strain onto an already stressful situation.

Out of pocket expenses

As you go through cancer treatments, smaller out of pocket expenses can begin to add up.  Travel costs to and from the hospital, specialty supplies, paying for private services to help you at home, follow up doctor visits, prescriptions not covered by your medical plan, and the big unknown is uncovered medical costs like trial drugs.

The big cancer charities (American Cancer Society (ACS) and the Leukemia Lymphoma Society (LLS)), they distribute the bulk of their funds to research and to a much lesser extent patient support. Of course, the research is important and continued advancement necessary for everyone to benefit from, but it leaves the patient mostly on their own to fund their care. The LLS has a once per year patient financial aid of $100 for completing a one page form. This renews each July 1^st.  Larger amounts from $1,000 - $10,000 are available through the LLS Co-Pay Assistance Program based on diagnosis type. You must complete an application.

In the end, personal fundraising becomes the best option for people.  There are now several websites dedicated to this purpose. Here are a few samples; Youcaring.com, Gofundme.com, and Crowdrise.com all allow you to quickly set up personal fundraising pages, send out updates and allow your network to donate via credit card online.

Assuming I can continue to work, I am expecting the total impact for my specific case to be around $25,000 for this year. While not a devastating amount, certainly an unplanned one. For most, they would experience and major income loss and this number would be much higher.

Belief

I don't remember too many days from high school more vividly than the day of the state qualifying swim meet my junior year.  My strongest event was the 100 yard backstroke, but I had spent almost the entire season swimming other events for the good of the team score.  We had three other strong backstroke swimmers including our senior captain who had faster times than I did.  Add to that, this meet had everyone from our region coming to compete and there were two other guys who also had posted times close to 1:00 throughout the season.  My best was a 1:02 from a meet where we crushed the other team, so I was able to get out of my other events.  You had to win the race to earn a trip to the state meet and get to compete against the top swimmers from all over New York and it was my dream to qualify.

I remember my swim coach (who recently reconnected with me!) telling me about the planning meeting that occurred before each state qualifier.  All the coaches met to enter their line-ups for each event and determine the final line ups for the meet.  He told me that when the 100 backstroke event came around and the names were announced.  Amongst them were a kid from our arch enemy Middletown who had posted some good times late in the season.  A kid who didn't have a swim team at his high school, but swam independently, specialized in backstroke, and also had posted fast times.  Our team captain.  Then he announced my name, a few of the other coaches said "oooh, sleeper".  He told me this story, then told me that he thought I was going to win the race.  I didn't share his confidence at the time based on my previous times and the limited amount of repetitions I had with the event in competition, but the show of confidence from him and the other coaches at the meeting boosted my confidence.

The pool stands were absolutely packed with parents and other teams.  The race was on of the last ones of the day and my nerves were running a mile a minute leading up to the start.  The race was spectacular with four of us neck and neck throughout all four laps and going right into the final wall together.  With backstroke, you can't always tell where you stand in a close race like you can with the other strokes, but I knew everyone was close.  We lunged backwards to the electronic touchpads on the wall and had to stand up to see the results hit the scoreboard on the wall.  I couldn't figure out what all the numbers meant, I looked at my coach and he was pointing at me.  Then I saw the time and place.  0:59 seconds, I won.  I qualified for the state meet, which was held at Syracuse University the following weekend. It was an amazing experience for me.  The power of believing put me over the top here.

Since I announced my diagnosis, many people have been reaching out, many of them are religious, many of them offering to pray for me, some of them doing it in front of me.  I've been thinking a lot about it and have been wanting to write about it, but religion can be a thorny issue and I certainly do not want to offend anyone.  But as all of this energy swirls around me, and I have certainly spent more time contemplating my own life and mortality, I keep finding myself wanting to dive in.

To paint the back ground, I refer to myself as a retired roman catholic.  I was baptized, confirmed, and attended church with my father regularly while growing up.  Beyond that, I was an alter boy (all positive) and while I was a boy scout in middle school, earned a special religious badge (Pope Pius XII) which required extra religious study and was eventually awarded to the few who earned it by the Cardinal himself at St. Patrick's Cathedral in NYC.  Our church was a great community-building place, and our priests and deacon were always great people.  But as time went on, it just became clear to me that while a god may have created this great, unexplained universe, man created religion.

On the positive side of religion, besides the great local communities that it builds (communities that can come together and rally around someone in need), many religions believe in an after life.   This is powerful stuff, particularly when you're really faced with the end of life.  As I laid awake at night in the dark, I could not help to imagine what it would be like to stare down a terminal situation.  And how, regardless of who is around you, in the end, it's just you inside of your own mind.  And in those moments, in that solitude, it really is only what YOU believe that matters.  So spending time arguing over beliefs, or trying to sway other's beliefs would be time wasted.  If one believes it in their minds and in their hearts, then it is so for them.

I unfortunately still cannot bring myself to believe that there is more to come after the end of my natural life.  If there is, hopefully I've done enough and the gatekeeper will still let me pass.  But, my viewpoint provides me focus and desire to survive here and now, because I believe this IS heaven we're living in now, better make the most of it.  As I said, people have been praying and offering to pray.  In the past I might have scoffed, but now, I willing accept all help.  And it's very uplifting to know those people are thinking about me and sending warm wishes in their own way.

As the treatment of my cancer continues, I must chose to believe that I will win this fight.  For me, there's just no other option. I think that's important for anyone facing not just a major illness or life event, but even in everyday life.  Big presentation?  Why not believe that it's going to go well?  Tennis match?  What not believe that you're going to win? You want to make career changes? Why not believe that you're going to make the right decisions? Issues with your significant other?  Why not believe that they love you and that if you need to work through an issue, they probably do too and you'll all be better for it afterwards.

Self belief is a powerful emotion and can come from within and can be reinforced from the people around us.  Surround yourself with positive people, be a positive influence on others, and spend some time believing in yourself.  It's powerful medicine.

Early Parole

Tuesday, February 18th

The day started very early for me, around 1:30am, when they did the final blood draw.  I was awake and as much as I tried, I was too wired and excited to go back to sleep.  I spent the balance of the night reading the rest of the China Study book my friend bought for me.  Really good stuff on cancer and diet, but more centered around tumor-based cancers (those are bad too).  I was unhooked from the IV all night which was a strange new freedom.  I was able to roll over in bed for example.  In the morning, it took me a while to realize that I could just get up and take a shower whenever I wanted to, no need to call the nurse to unhook me.  It sounds strange, but after 25 days, it was now hard to start adjusting to these new freedoms.

I spent the morning packing up and doing some work while I waited for the doctor parade to begin.  One by one they came in to get one last charge tacked on and sign off on discharge orders.  I needed all discharges signed before they would remove the PICC line.  My sister and brother-in-law showed up and I asked her to shave my head down.  The hair had been hanging on pretty well, but after this morning's shower, it was looking sparse and ugly, time to go.  It took some work as we didn't have any clippers to get it all the way down.  But the result seems rather beautiful, don't you think?

By 11:30 I finally had all the required signatures and the nurse came to pull out the line.  By then, both my sisters, both brother-in-laws, and Joanne had arrived to have lunch together.  Oh, my niece was there too!  We ate lunch downstairs in the cafeteria like normal folks.  I didn't have to wear a mask to go outside the room, didn't have tubes dangling out of my arm, didn't have to worry about not eating raw vegetables due to bacteria.  Just a normal person.  After lunch, I had to say farewell to everyone else as they all had to get on the road back to their lives.  Huge thank you's again to all of them for the support and love.

Joanne and I returned to the room for the final check out.  We finished packing, waited for the obligatory wheelchair, then filled the wheelchair with all the stuff we had to carry out to the car and walked OUT THE DOOR!  The ride home was overwhelming on my senses I found.  But it felt great.  We were home by 4:30 and began the hug line.  A few neighbors spotted us coming in and rushed over to say hello.  Summer, our dog, was able to say hello for the first time since I left.  She's a hound / mutt that likes to chase rabbits around the neighborhood whenever she can break away from the house. So when the front door opened for her to say her big hello, she sniffed me briefly and took off running to see what she could find. So much for a big welcome home.  The kids were much happier to see me with big hugs all around.  Hard to describe how great it all felt.

The past few days had been exhausting and the past few nights only yielded 3-4 hours of sleep each.  After eating a little dinner, I crashed on the couch for over two hours.  I was able to sit up and watch the Olympics for a while, kiss the kids goodnight and tuck them in, then went to sleep, in my own bed.

Parole Hearing

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Monday, February 17th.

Monday's news was good with blood levels all starting to rise dramatically.  With Wednesday set as my release date, I was having a hard time sleeping through the night.  I spent the early morning hours emailing and reading.  My Dad & step mom came back to Orlando for lunch after visiting her parents near Tampa over the weekend.  Both sisters and my brother-in-law came back as well, Jennifer (AJ) had made a cake as it was my step mom's birthday.  We had lunch outside by the lake complete with cake for desert.  Happy Birthday Ruth!

With the change in mood and direction for me, besides thinking about the future again, I've been doing a lot of thinking about other people starting with my family and my Dad.  My father was diagnosed with Parkinson's Disease a few years ago and I realized that I had not really engaged fully with what was going on.  In talking with my siblings, it turns out that most of them seemed short on information as well.  So during one of my wakeful nights I started researching online.  I found a book and purchased a copy for each one of our family members (bit of a trick shipping a single order to six different location in Amazon, but it worked), and discovered the National Parkinson's Foundation.  I was able to share all that information with my Dad and sisters as we sat together after lunch. It was great to have an open family conversation about what was going on and to let my Dad know that we are all there for him.  For me, it felt great to give back a little.

In the late afternoon, the Oncologist arrived and surprised me with the news that my blood levels were looking good enough that I could go home tomorrow!  That threw things into a swirl as we already had a plan for Wednesday.  Now Joanne had to scramble to reschedule some patients and I started thinking about all the questions I had for discharge.  Time to make a list.  Good hospital tip here - if you must spend a lot of time in a hospital, get a notebook and pen and keep it next to you.  There are always questions you think about, but frequently forget when the doctors pop into the room.  Good to write them down and good to take notes when they're giving you instructions.  I was also able to convince the Oncologist to take me off the IV!  Finally, I was unhooked from the stand.  It was a big moment.  The PICC line and leads still dangled out of my arm as they would have to draw blood one more time tonight, but I was 'free.'

My sister, Jennifer, brother-in-law, and mom returned for what was now a celebration dinner.  She made a great chicken parmesan with pasta dish and I still had a nice piece of chocolate cake left over from lunch.  My mom took off for home and we got to spend some quality time hashing through some family issues.  Communication has not been my family's strong suit over the years.  But due to the time we were able to spend together, and due to my own desire to remove stress around my life to assist with healing, we all started having what I believe are some pretty productive conversations.  Not that I recommend getting cancer as a way to solve old family issues, but I'm happy that we're enjoying additional benefits as a group.

Not sure I'm going to get much sleep tonight.

Seeing a bigger picture

Sunday, February 16th

With the good news of yesterday and tons of visitors scheduled, it was shaping up to be a great day.  My shower in the am revealed that my hair was now falling out en masse.  Once the good news arrived, the doctors started me on Neupogen, which is a white blood cell booster, but comes along with hair loss as a side effect.  I was a swimmer in high school and college where annual full-body shave downs were a ritual, so I don't carry any stress around this process.  Just a little inconvenient having bits of hair everywhere.  My pillowcase is now covered each morning.

The kids were happily playing with their cousins at my sister's house so Joanne arrived alone.  We were able to have some good conversations and begin reviewing all the questions we have for the transfer home and the Consolidation Phases that will follow.  She went back to fetch the kids and lunch as we had another great picnic lunch outside and walked by the lake holding hands with my daughters.

Joanne picked up Just Dance for the XBox and kids enjoyed some after lunch exercise.  I just loved watching them, even the mini arguments that inevitably break out.  They stayed until about 4:30 and then headed back to Vero as Joanne has patients of her own to see on Monday and Brenna has a band rehearsal all day to prep for her trip to Jacksonville.  One cool part of the day was that we pulled up the pending soccer schedule for the girls and opening weekend is March 1/2, and I will be home for it!

Next up was some visitors from Spartan Race.  Joe, Mike, and Dann stopped by to visit.  There was just a race in Tampa that brought them all down.  It was great to see them live and pass some time.  A woman came with them whom I had never met, because she wanted to pray with me.  She was so forceful in her effort that she actually kicked the other guys out of the room so she could perform her prayer properly, which took everyone off guard.  All help accepted at this point.  (I'll get to religion as a separate entry at some point).

For the evening, my sister and brother-in-law brought me some great dinner and a movie - Lincoln.  I thought the movie was good after hearing mixed reviews.  The company was excellent and we had the first of several talks about family matters.  My Dad has Parkinson's Disease, and getting to spend so much time with my family recently has brought to the fact that I haven't been actively involved with his health due to my own busy life.  Something I plan to change.

I haven't had too many epiphanies yet about the future or major course corrections that I feel I must suddenly make in my life. Maybe those will come down the road as my mind transitions from the here and now back to dreaming about the future.  But, the rapid change in perspective that this life event has given me has made me want to dive into and address head on any festering personal issues.  I've already begun that process with my family and I hope that it will continue to boil over into everything I do.  I feel emboldened by this event and it's giving me the motivation to address some things that I have ignored for a while that were causing stress with my family and within me.  So, like cancer, why not stomp them out and create a healthier living environment for all?

Remission Day

Saturday, February 15

Let's cut to the chase.  Happy news today that the Leukemia is in remission with < 1% blast cells remaining in the marrow.  They've started me on WBC booster shots and are preparing me to leave the hospital as soon as Wednesday!  HUGE RELIEF, HAPPY DAY!

To back up the story - I work up Saturday morning early as I was restless again for the test results.  Here's the problem, the test was taken very late on Friday night.  During the weekend, the labs go into emergency-mode only, so they're focused on ER and surgery cases.  When the PA from the Oncology group came in, she said it could take two business days to get the results back.  "Business Day" - totally meaningless term at this point, I thought.  I was starting to resign myself to not finding out until Monday.  The problem is that I know that the Oncologist wanted to start me on WBC booster ASAP if the test results were good, and he would want to start me right back on chemo if they were not good.  I started getting aggravated actually for the first time since I've been here.  Technically my WBC is at critical levels and future medical decisions were held up here.  I wasn't sure how much the lead Oncologist could push behind the scenes.

Once again, my brother-in-law came to the rescue.  He placed a call to a pathologist buddy of his, who placed a personal call into the lab and asked for some priority.  I literally offered to pay someone's overtime to come in and work for the day.  But that wasn't necessary, they got the work done and by mid-morning the preliminary results were in.  Can't thank Dr. Masters enough.

The family came in and the mood was obviously joyous.  We played some board games, went outside for lunch, took a walk, and returned to watch some UConn Basketball and Olympics.  One of the covering Oncologists visited and was the one who suggested that I could go home by Tuesday or Wednesday.  We didn't want to believe him right out, but he seemed pretty confident.

Joanne took the kids back to my sister's and I grabbed a quick nap. Another sister (the one who helps me with this blog) & brother-in-law flew in from Los Angeles and drove straight over to say hello, along with my mother.  I get to see them the least of my siblings so it was great to be face to face again.  She's promised to return with some home cooking for me for Sunday & Monday nights.

Joanne returned for the evening with another great meal and we enjoyed a celebratory dinner.  Such a huge weight off our shoulders.  We even began talking about the future for the first time in a while.  My wife also noticed my pillow on my bed.  It was now full of hair.  A small price to pay for me, but I can imagine the impact this would have on a child or woman.  Anyway, looks like the process is finally taking hold and I won't need that Brazilian Wax after all.

Happy Valentine's Day

Friday, February 14th, 2014

I had a feeling going to bed on Thursday night that I might be in for a long night.  The marrow biopsy had finally been scheduled for Friday and I found out that I was slotted for 3:00pm.  I was pretty deflated because I was expecting to go first thing in the morning and potentially find out some preliminary results by that evening. Now, I was starting to grow concerned that a late test would mean delayed results.  Since it would be Friday afternoon, no telling what that means for the lab over the weekend.  Additionally, since they give you mild sedation for the procedure, you have to fast for eight hours prior.  However, they said it's always possible that the schedule opens up and they could call for me early.  So Thursday night's meal at 6:00pm would be my last food for while.

I slept well from 9:30 until the blood draw at 1:00am, but after waking up for that process, I could not get back to sleep.  As much as I tried to relax and put the test out of my mind, I couldn't do it.  I tossed and turned in the dark, then gave in and jumped onto the computer.  There would be no more rest tonight.

Through the morning I started bothering the nurse to call down to the lab to see if there was an opening.  As it turns out, lab was busy and continued to run behind, it wasn't looking good.  My kids had the day off of school, so after Joanne treated a few patients in the morning they headed up.  My Dad and step mom stopped by for what was suppose to be lunch (so hungry) and were here when the kids arrived.  Great for the kids to see them as we don't get to spend as much time together now that we live in Florida.  It was approaching 3:00 when the nurse came in and told me I had been pushed back to 4:00 as they were running behind!  I was exhausted and hit the bed for a short snooze.

Finally, they came to fetch me and Joanne took the kids back to my sister's house with a promise to return with a nice steak dinner. The procedure took about an hour and a half and I fell asleep again with the light sedation provided, so no pain for now.  I was back in my room by 5:30 and Joanne was there waiting for me for a great Valentine's evening.  She had prepared dinner for us (complete with more spinach!) and I ate a HUGE meal.  There was a full moon that rose right out my window as we enjoyed dinner alone (well except the constant interruptions from the nurse, the cleaning people, the doctors), but I didn't care.  I was much more at ease now and had given in to the fact that it would take another day to learn about the results.  The evening was great medicine.