7/29/15    How Cancer Has Affected Me and My Financial Situation:

Just a few days after Christmas, immediately before the beginning of a new year, I was blindsided with the news of my Hodgkin’s Lymphoma made a return visit.  As I eyed February as a celebratory milestone, three years of remission, I was ill-prepared for the news that I’d have to fight this again.

My internal dialogue simply couldn’t make sense of it.

I’ve never been able to make sense of having cancer.

But, cancer doesn’t make sense.  It doesn’t rationalize nor reason. It just happens.  The idealogy of feeling above the fray in terms of having never smoked, nor drank, nor done a drug means absolutely nothing. I’m of the mind that living a clean lifestyle (I’ve been vegan since 18; I’m 35) helps to maintain some level of strength throughout this treatment I’m undergoing, but it doesn’t prevent cancer, or cancer recurrence. So, circumstances have has a way of adjusting my thinking. Firmly.

My reaction to the news of my recurrence was as drastically different to that of my initital diagnosis as humanly possible.  My oncologist categorized my lack of response to the initital diagnosis (September 2011) as abnormal, and it likely was. I was numb. Unaffected. Perhaps, I was too surprised to register any real emotion. I didn’t grieve. I didn’t cry. I didn’t get angry. Nothing.

This time around, I was a mess, a teary, devastated heap.

Futhermore, I justified blaming myself for the recurrence.

“It must have come back because I don’t exercise enough.”

“This Is punishment for the things I have done wrong.”

“I eate too much soy.  I brought this onto myself.”

“I don’t drink enough water.  That must be why.”

“I don’t get enough rest; this is my body’s response.”

January 2015, a new year, brought forth a new treatment regimen. (ABVD, Adriamycin, Bleoymcin, Vinblastine, Dacarbazine, Rituxan was added in April) This chemo is and has been the real deal, the stuff that makes your hair fall out, it damages your lungs, it damages your heart. It’s as if the chemo I received the first time (R-CVP) around was ‘starter chemo,” because I tolerated it so well. It has largely been a different story with this regimen.  Initially, I had pulmonary issues culminating in an 11-hour emergency room stay, on Valentine’s Day night. Prior to that, I couldn’t sleep for 5 consecutive days due to the horrendous, incessant bronchospastic cough that I was unable to tame. I struggled mightily and felt woefully unprepared and profoundly overmatched.

I continue to struggle with Fatigue; every day is a struggle and I am fighting hard, every day.  Well, most days.  Frankly, immediately after treatment and within the subsequent 2-3, sometimes 4-5 days, I lose resolve, I suffer, I fall to the floor, and struggle to pick myself back up because I feel too sick.  Not that I’ve ever been in a fight, but it’s seemingly comparable to taking a few body shots, staggering to the canvas, and wanting my corner to throw in the towel. But, my corner doesn’t throw in the towel.  My wife, my daughter, my parents in their own collective way, friends on Facebook, some of my coworkers, encourage me to put up a fight, to counter the sometimes overwhelming desire to give in, and within a week or so after treatment, I’m feeling strong.  I’m in the gym,, I’m lifting weights, I’m (struggling though) running, I’m biking, I’m leading as close to a normal life as I can.  Then, it’s time for another round of treatment, which erases all of the strength I felt I had. It’s a vicious cycle and despite the predictability of knowing that I am going to feel sick for a certain length of time, I’ve  never gotten used to how crappy it makes me feel, inside and out.

Throughout this journey, this fight, I’ve been weakened.  My mind has ventured off into dark regions.  I’ve gotten really down.  My faith has been tested. I’ve become withdrawn. I’ve lost connection to my sense of self, felling that I have lost my way. I’ve struggled with lessened energy and thereby feeling that I am a lesser husband and a lesser father.  It’s hard to play outside with my 5-year old daughter when any sustained cardiovascular activity sends me into a vicious coughing fit. It’s unsafe for me to be out in the heat too long in that chemo has caused pulmonary and respiratory problems I’ve never seen before. It’s a struggle to take my daughter for a bike ride around the neighborhood.  Being the intelligent, aware person she is, she understands that I am not the same, and it’s heartbreaking to be compromised, even if I’m trying my best.  I’ve continued to be a ghost of a friend, a shell of who I used to be, or who I aspire to be. I’ve strayed from the path of personal and career improvement.  I still work full time so that our financial situation doesn’t worsen beyond where it currently is, and beyond that 40-hour commitment, I simply don’t have much energy left.

**Just yesterday (July 2015), I received the results of the third PET scan I’ve received during the treatment of my recurrent lymphoma.  After having finished six months, six cycles, twelve infusions of chemotherapy, the hope was that I would be in remission, as the plan was for me to move on to autologous stem cell transplantation at Dana Faber sometime in August.  Unfortunately, the results show that the lymphoma has effectively worsened.  It has soared within my vertebrae, remains active within the upper and lower poles of my spleen, and is still active in my left armpit and within my stomach.  All of the time, energy, resources, and struggle put forth during this fight did not bring forth the desired results of remission, and I’m back to the drawing board. I’m looking at more treatment, more doctor’s visits, and it’s all very scary.

During a time in which I’m supposed to focus on getting better, it’s increasingly hard to not become stresses about the pile of medical bills coming through on what seems like a daily basis; Hartford Hospital on day, Jefferson Radiology the next, then, Oncology Associates, Clinical Laboratory Partners, American Adjustment Bureau because some have gone into collections, etc. I feel bombarded by crushing fatigue and the myriad of side effects from chemotherapy; I fee; like my checking account is being bombarded as well.  All of the physicians whom I see are specialists, so that requires a $45 co-pay per visit.  There are some weeks in which I see an oncologist on a Tuesday and cardiologist on Thursday.  Intermittently, I’ll have to go in for pulmonary testing, or to a dermatologist.  My life revolves around being a patient and I’ve learned how expensive it is to be ill.  Months ago, I exhausted the $2,500 maximum I put aside for my Flexible Savings Account for the year, so that buffer of sorts is gone.  Co-pays, medications, blood work all come out of pocket and it’s hard to balance it with rent, food household items, my daughter’s needs, etc. Having less to work with means that I constantly live with the threat of various utilities and services being discontinued because I choose health over paying T-Mobile, Xfinity, or Eversource on time. Despite my wife’s reassuring words of conciliation that things will work out, it wears on me. I’, a responsible person; I don’t like falling behind, or being on the verge of losing things that ensure a respectable quality of life. It feels like a victory of sorts when one of said utilities is paid off or partially paid, but the victory is short-lived in that another notice threatening shut-off is likely waiting for us in the mailbox.  

Written by S. D.