For the last year my life has been a series of press releases. When we announced Brandon’s cancer originally in 2014 we did it via Facebook post because repeating to story so many times was too gut wrenching to handle. That’s even more true this time. Today I wrote this release:
“It took me a long time to write this post. The truth is, saying it makes it more real & I’ve been desperately trying to distance myself from the reality of things. That’s a luxury we can no longer afford. We also apologize for sending this information out via Facebook instead of the personal outreach you each, as our friends, deserve. We could give some obvious line about the far reaching powers of the internet but the reality is that every time we have to tell the story it takes an emotional toll. It’s exhausting & numbing & furthers our sense of despair to have to tell the same sad story over & over. I’m wussing out & posting it this way out of our own selfish need not to feel like we’re drowning it it entirely with each person to whom we share.
Brandon’s cancer has returned after only 4 months of complete remission after stopping active
treatment. This time it’s much less widespread but it’s still not a good prospect. We’ve been living with this since his initial PET results in February. The oncologist at Johns Hopkins is scheduled for the beginning of July but at this point the proposed treatment sounds like it will be another series of chemo (a different cocktail & a stronger dose) coupled with some radiation followed by autologous stem cell transplants. It will likely require several weeks long stays at Johns Hopkins in Baltimore. Or possibly a research trial. We don’t really know.
According to the National Cancer Institute (at the National Institutes of Health) the statistics are this: Patients whose initial remission after chemotherapy was shorter than 1 year (early relapse) do much worse and have long-term survival of 11% to 46%. Everything about this situation is devastating.
He is, obviously still unable to work. Up to this point he had planned to return to work as soon as he was given the “all clear” we expected instead of this somber news. Now that is no longer an option & frankly we are uncertain how to handle the resulting financial hurdles. Taxes wiped out our savings.
I am also unable to work a regular job at present (though I still do odd bits when I can) as a result of the unpredictable schedule & amount of time off I need to take care of my husband & daughter as well as some medical issues of my own. We have little to no support from my family as my mother lives out of state & is unable to provide much in the way of financial aid, And my father, who is still local, has been so unsupportive that I’ve severed ties with him.
Christina is in a highly competitive cosmetology program at Washington County Technical High School which comes with additional burdens such as the cost of her supplies both in & out of class. The projected cost for her Senior Kit (which must be purchased by the end of July) is approximately $350 – $400. She will also be needing to get her driver’s license over the summer so that she can meet some of her own needs as well as have the ability to maintain a job. Even if she does not have her own car and instead borrows ours this adds another $100/month to our car insurance costs.
Additionally we have lost our medical coverage effective June 30th. The upcoming visit with the John Hopkins oncologist will not be covered. I have no idea how to resolve that. We’ve applied for assistance through the state & Brandon’s disability payments are more than the financial limit for help of any kind. This leaves us staring down an additional $600 – $1000 (minimum) each month in insurance premiums & copays. Not to mention the deductibles we will be responsible for.
In Maryland a family of 3, living on $42000/year, with chronic medical problems including: asthma, fibromyalgia, anxiety, PTSD, chronic pain, and cancer… is ineligible for any type of county, state, or federal aid. And in surrounding states the aid eligibility is even less in our favor.
Social Security Disability benefits will begin in September. But we have to get through the remainder of their five month waiting period. They didn’t backdate benefits to the date first applied, in March 2014. We don’t have the money for a lawyer to argue it. We’ve already been told that if we appeal the start date we may lose the benefits entirely.
He isn’t eligible for medicare until he’s been on Social Security Disability for 24 months. That makes it March 2017.
Our income is too high to qualify for medicaid. We’re $13000 over.
We are eligible for a Qualified Healthcare Plan. So between the premiums & copays that’s the aforementioned extra $600 – $1000/month minimum.
And our landlord (my mother) is unable to subsidise any part of our the rent.
We don’t qualify for energy assistance, food stamps, or any other services.
We don’t qualify for financial aid of any kind. We don’t qualify for housing assistance.
My husband’s therapist is in an office that doesn’t allow them to write letters of support for Emotional Support Animals so we don’t even have the protection to keep our full family together should we be evicted or otherwise have to relocate.
We are faced with very real choices between necessities & cancer treatment. My medication vs his. Cutting out every ray of happiness & hope we have – moving, getting rid of our dog, yanking our kid out of her tech school (that she worked hard to get into & is doing well at) during her senior year… and still being met with a curt “sorry, folks, we can’t help you”.
Even Brandon’s life insurance policy was cancelled. Months ago.
There is no help.
We are all very emotional at this time. Christina especially does not want to discuss the goings on (though on the occasions she does she would be very grateful for a gentle shoulder to lean on). Brandon & I are coping as best we can and with our typically dark sense of humour.
The bottom line is this: we need help & we’re bad at asking for it. We’re also, sometimes, not so great at accepting it. If you are able to contribute financially our GoFundMe account is still open & has been updated to reflect the new situation or if you would rather you may send direct to us. If you cannot help financially, perhaps you could consider sharing the page or helping in some other way; researching programs & other helpful resources, helping with household chores/maintenance, being available to check on or spend time with Christina if we are in fact needing to be away from our home (and therefore her and Azumi) for days or weeks at a time, or just spending time with us.
Please understand that we may be unable to make any firm plans or we may have to cancel things last minute, there may be days we simply ignore the outside world, or meltdown for no apparent reason… don’t take it personally. We are doing the best we can in a terrible situation, please know that we love you anyway.
Oh yeah, and FUCK CANCER.”