As I sit on my deck exercising my 21st Amendment Rights with an Eagle Harbor IPA from Bainbridge Island brewery, watching two horses graze in a turnout below and with boats in the distance in the bay below, life should be wonderful. But the feeling of helplessness consumes me. I have watched my granddaughter go through a half dozen surgeries to remove masses in her body and knowing that three more have grown in the 6 weeks since her last surgery and wondering why no doctor can determine the cause or adequately diagnose it further than saying it is probably an auto-immune ailment. It is a journey that emphasizes everything wrong about health care and some things and some people who have helped. As she moved from public insurance to private insurance her experience and how she was treated changed. It is a journey of frustration, depression, defeat and at times hope. It is also a journey that continues and I write this in hope that someone can recognize what the problem might be so we can research it further. It will be 6 months before her case is taken up by the University of Washington Research Medical center and we worry about those six months.
When the first lump appeared, and sorry, there have been so many I do not remember the order they were in but they all have been essentially the same, it grew rapidly. I believe this one was about tennis ball sized when removed and it took several months for surgical referrals, consults, and finally the surgery as it grew. She was under Washington States Apple program as a dependent of a mother in a low enough income category to qualify. I believe Apple is a part of the ACA. What I do know is that though a person gets coverage, the users of this program get low priorities and are generally looked down on by the administrators of the facilities she utilized, perhaps because they are considered poor. She described her doctor as “dismissive”, but did like her surgeon, once she was finally referred to see her. During the course of 2018 she had 4-5 surgeries for masses and on a few occasions more than one were removed during the same anesthesia. These were on her chest, back, upper arm, abdomen, thigh, buttocks and ovary. The latter one may or may not be related. All masses are encased, all are identified when they are about marble sized, some have grown into adjacent muscles and all are on her left side. We worry about one growing into an organ.
My granddaughter wrote a poem which describes the condition better than I can and expresses her feelings:
When standing on the precipice
of new discoveries,
one should be elated
unless
one’s own body should become
the playground for observing
alchemical processes
within the subcutaneous layer.
One dare not pierce a muscle,
unless defied by the sticky strands around an
encapsulated wealth of fluid
seeking to form walls of
ragged meat
reaching for the fibrous stretch and strain
of thicker flesh
beneath.
Poets desperately wish for scars to be poetic,
ascribe meaning to bits of nipped out skin,
as though they are anything
but a small, pink collection of
new deformities,
disrupting fingers spread
across a formerly smooth expanse.
What scars lack most is eroticism,
like the word “disease”,
evoking images of oozing
and sutures
and medical glue
holding two parted slabs
in place
impervious to water.
At any rate, Aubrey moved to her employer’s private insurance in 2019 and her respect as a patient went up. She has commented several times on how things happen faster and she gets less of an attitude when she checks in. But there are high deductibles and high limits that have to kick in before all charges can be covered. This is difficult financially due to the amount of time off and low pay or no pay weeks. Fortunately, she has a support system to help here, but not everyone is so fortunate.
Doctors have all said they have seen nothing like it. All tumors have been benign with little information from pathology. All tumors have been on the left side of the body. She has seen a dermatologist and rheumatologist, has had courses of antibiotics prescribed with no improvement, and the rheumatologist has now prescribed Humira as a possible remedy. From GoodRz.com I copied the following: “ADALIMUMAB is used to treat rheumatoid and psoriatic arthritis. It is also used to treat ankylosing spondylitis, Crohn's disease, ulcerative colitis, plaque psoriasis, hidradenitis suppurativa, and uveitis. The lowest GoodRx price for the most common version of Humira is around $5,130.76, 9% off the average retail price of $5,683.94.” It should be noted that cost is monthly cost. The rheumatologist has put her in as a candidate for financial assistance and I know little about this. But I believe this will make it semi-affordable with her insurance. Odds of it working are unknown. I think they just want to try something.
My granddaughter laments that this is a cruel joke as she has publicly made fun of Humira’s ads in the past, though they are not memorable to me. When the doctor was describing how she would give herself injections, she shut down which she does during depression which she has suffered with for years. If it is hard on her grandparents, imagine how hard it is for a 23 year old.
At present she is scheduled for more surgery next week for arm, breast and abdominal cysts. But it depends on getting a mammogram first and the surgeon wants to wait until after her Humira trial. So we will see whether they are removed now when they are less that golf ball sized or later when the are tennis ball sized or maybe even softball sized. She does name them. A previous one on her butt was called Donald, after who knows?
This article discusses the manufacturer’s explanation for why the cost is so high. Essentially, it is what the market will bear and they will fight anyone who even comes close to replicating anything that might come close to its techniques and genetic analysis thereby guaranteeing monopolistic control.
This is a typical removed mass and she names them all. I believe this was Donald although it might have been Jeff Sessions (named because at the time Sessions was also something that needed to be removed.)
So what does the future hold? Uncertainty. Uncertainty of getting a diagnosis. Uncertainty of cost. Uncertainty of effectiveness of treatment. And more frustration.
If anyone has seen this case history before and sorry I do not know all the medical terms, I would appreciate a comment so we can do our own research. As 25 year members of an HMO, my wife and I figured out our treatments and tests often were related to our research. We noted we didn’t get certain tests until we asked “what about” questions. Then they were promptly prescribed. I think if we just had something to make us feel like we were contributing, it would ease this anxiety a bit. In the meantime we will be hoping for Medicare for all and a reigning in of big pharma. Right now I am waiting for particulars from a friend who thinks he knows of someone who had a similar problem that was cured with dietary changes. It is a long shot, of course, but I am pursuing it.
Thank you for reading and if you have seen or heard anything like this condition before please let me know in a comment below. Good health to you all.