Yes, I admit I was concerned ….. at the beginning…..that it was cancer.
About twenty years ago, when I had a small child and a husband who had been diagnosed with an incurable brain cancer, I told my doctor if the pain in my leg was cancer, just amputate it now. I didn’t have the time or energy to fight it. He assured me (well, he used these words but assurance is too strong a word) that there is only one cancer permitted per family.
I had noticed a tender spot while shaving my leg. The resident who preceded the doctor told me not to press the spot. I informed her that my duty was to help train her and that was the “B” answer.
The doctor suggested it was a deep varicose vein and not to worry about it. He did no tests.
I can’t say I “worried” about it, but as it periodically would throb a bit, I would be reminded once again that something was not normal.
Ten years later, life having moved me on to becoming a widow and then a new bride, I approached a new doctor in West Virginia with the issue. He sent me to get an ultrasound to check out the varicose vein hypothesis. Proven false, he then opined it was a torn muscle. How the muscle tore and why it wasn’t healed after ten years was not answered.
So, another ten years and here I am.
Having paid my maximum out of pocket for my health insurance earlier this year, I am taking care of a number of issues right now with the right hip surgery and both eyes’ cataract surgeries scheduled before the end of the year. And yes, it was time to get this “thing” diagnosed and treated.
By this time the periodic throbbing actually woke me up out of sound sleep. On a scale of 1-10 it was an 8 at least. Thank goodness the spasms were short lived and periodic. Otherwise, I would have checked it out earlier, budget be damned. So my PCP send me for an MRI and with the radiology report supporting my belief that there was “something in there” I then went to a general surgeon here in McMinnville.
He could not feel the little nodule. I offered to put my finger on it and he could draw a circle around my finger but he wanted to do it his way. Poke poke poke with active and increasingly loud confirmation by me when he hit the spot.
He told me there were about six in there and we scheduled an in-office procedure to remove the buggers. He believed they were subcutaneous cysts just below the skin and not in the muscle. Simple to remove.
I SHOULD have taken a photo of them, as of course I requested seeing what they looked like. Perhaps the more squeamish of you are glad I did not grab that opportunity. Suffice it to say that there were about 5 or 6 very small round pale tan nodules, each about .5 cm in size. He slapped a bandage on me, restricted me from the hot tub and pool exercise class for 2 weeks while the wound healed, and told me to come back then. Stitches dissolved but I discovered whatever tape they used to cover the bandage has an adhesive that made me very itchy. One more exciting allergy to add to my list. (The bandage adhesive I have had for my knee and hip surgery did not bother me…so different tape was used. Thank goodness for different tape!)
Anyway, we know I tend to do things that other people never experience. Such was the confirmation from the biopsy. They were glomus tumors. Most people get them in their hands, sometimes under the fingernails. They usually present in young adults (well, I WAS 20 years younger when it presented, within the typical age group). And they account for about 1% of all soft tissue tumors. Yeah me!
And, it is not cancer. Continuing to breathe.
So, my point? Know you body. Listen to your body. You are the only one who knows what feels normal and what is not a regular sensation. If your doctor pooh poohs you, find another doctor to get a second opinion. In my case, it took four doctors who did not know but one who could at least move us forward to the information stage.
Be proactive with your aches and pains. Catch things when they are smaller….no matter the fear of what it could be…..better to catch it sooner than later.
Oh……the funniest thing the surgeon said? “You are going to have a small scar.” Okay, two stitches compared to my two back surgeries, C-section, knee replacement, left hip replacement, pending right knee replacement and my first scar: my right elbow from 5 stitches used when I had a bike accident when I was 9 years old. At this point in my life, who cares????!!!
So many changes. Any time you can talk to someone whose life has spanned more decades than your’s, an interesting discussion could result if you asked about big changes they had observed. I thought I’d take you through a small walk about health care as I have experienced it. I suspect this post will be longer than most I write.
My mom trained as a nurse in the 1940s and met a doctor studying to be a pediatrician at the hospital in New York City. When she and my dad moved to New Jersey they were thrilled the doctor had set up practice in the next town and I was told years later that I was his first baby, whatever that implies. Anyway, we would go to his office, located in the first floor of a multi-family house and wait to be called in. I read Highlights magazines and graduated later to Reader Digests. (I guess some things never change.) I had my first asthma attack at age 5 playing with a hula hoop. I received allergy shots with needles that were sterilized with the glass syringes in the doctor’s office in their autoclave. When I was too sick to go to his office, he came to our house. The house call that no longer exists.
In college I went to the college infirmary. The health care fee was covered in our overall tuition which was about $500 a year. My 19-year-old skiing accident where I banged up my knee was ignored and over a few weeks I healed. I developed arthritis in that knee in my 40s. (Life lesson…if you get hurt, even if you are young and can heal well, go get help to make sure you are healing correctly.)
My first job after college was for the State of Tennessee in Nashville. I really do not remember the insurance plan provided but it would have been a large group of state employees. I didn’t see the doctor at all except my annual checks for health and I ended up with a minor surgery. I did not take any medication in those days. I don’t remember the fees but I do remember there was no stress in paying even though I was making about $6,000 a year.
I changed jobs and moved to Memphis a few years later and in the course of the move, hurt my back. My new insurance was through my company and even though the injury happened before my first day of work, there was no waiting period. I saw a chiropractor a few times and then an orthopedic specialist for a year before opting for surgery. There were no MRIs in those days and I was in the hospital for 4 days. My portion of the bill was under $100. I also started allergy shots again while living there and paid $1 per shot.
I ended up a few years later in Connecticut. My husband worked and had Blue Cross through his employer. He needed counseling and later a short hospitalization. I started taking blood pressure medication. We had two babies (one by c-section). One baby needed a couple of surgeries. Our copays for medicine were $1. The hospital bills were $500 for the c-section, $300 for the next delivery VBAC, and the other surgeries were about $300 each.
That husband and I split and I was able to pick up coverage for a Kaiser Permanente HMO plan through a small business group. I paid $400 a month for a family plan which included my two kids and me, and later, a new husband. It had no copays nor prescription costs. I fell and hurt my back again. Again I saw a chiropractor for a while and then he referred me to an orthopedic surgeon. Still no MRI in those days. The hospital stay was 2 days and I think my bill was about $700. I later had a miscarriage and the D&C cost nothing since it was done in the office. My last baby was born in the same hospital as the first, 11 years before but was also a VBAC and cost about $500.
Then I moved back to Nashville and my husband started working for the State of Tennessee and we had HMO plan through Aetna. Prescriptions were $2 or $5 each. Doctor visits to our primary physician were free. Specialists were more and this was when things started getting really interesting since my husband was soon diagnosed with brain cancer. We were sent for a C-Scan one day and then an MRI the next. The specialist at Vanderbilt Medical Center ran a kazillion tests to determine where the tumor was located and the potential effect removal would have. Surgery was scheduled and became the day my life seriously changed as he had the equivalent of a stroke on the operating table and was not expected to survive. But he made it through the night, improved in fits and starts in 8 weeks in the ICU, another 2 weeks in a regular room and then home. Physical therapy was provided at home for a few sessions and then we went to the clinic for that. I understood the coverage for physical therapy, occupational therapy and speech therapy was for 5 weeks. The clinic suggested visits twice a week. We asked for and went daily every weekday of those 5 weeks. At that point he had improved enough that they wanted to try the surgery they had had to stop 5 months before. It went well, with 2 weeks in ICU and then home after another week. The bill, when it got to us and I finally figured out the in and out and all around nonsense, was $7500 to us.
(Now, we step aside for a minute. Recognizing that $7500 is an amazingly low bill for all the scans and surgeries and special tests and ICU and medicines, it still was something above and beyond what we could afford. He was the wage earner. I was home with the baby, something both of us had wanted to try to do for a couple of years and I was just starting to look for work when his seizures started. So, we had no income, no savings and we had that $7500 bill and of course all our normal living expenses and rent, utilities, food, car expenses and then I needed migraine medications, I’m sure you can understand why.
At that point I did a few things. First, I called our landlord and asked him if he had a smaller, less expensive place for us to live and he listened to the why of the question, was silent and then said “The last thing you need is to move. Pay me when you can as much as you can and don’t worry about it until then. I am in a position to help you.” That man is one of my life angels. I have used this story whenever I hear anyone talk about how people who are homeless are all drug addicts or drunks and basically did it to themselves. There but for the grace of that wonderful man, we would have been homeless.
I also called and talked to someone at the county level to find out if I qualified for any assistance program for the six months until the social security disability payments kicked in. They said no. The problem was we had a VERY few thousand dollars in our IRAs and they wanted us to use that up before any public assistance would kick in. The fact that it was a temporary need and very little set aside for our future did not work into any equation for help.
Finally, I called the credit card companies. We had 3 cards and each had about $2000 on it. I asked for the cards to be frozen. Basically I would not use them but asked for no interest or penalties. I owed the $6000 but did not want to see it go ridiculously higher when we could not make payments. They refused to work with me.)
So, back to the medical care. Cancer is expensive. We had radiation therapy. We had chemotherapy. And then, something unexpected happened. He did not die. I was told to expect him to not live beyond five years and when all was said and done, it was about 10 years. I had gotten a job after the first round of chemo so we would start having more income. I was lucky to get a job at Vanderbilt Medical Center and later the University. In those days the issue of pre-existing conditions meant that he would have had no medical coverage at all and I would not have had coverage for my blood pressure, allergies and stupid migraines for at least 12 months. But the year before the Democratic Congress had passed a law that any employer with more than 100 employees would offer health plans with no pre-existing conditions limitations.
So on we went. The plan each year at Vanderbilt changed. Sometimes it was strongly limited to Vanderbilt with very low fees inside that medical center and higher rates outside. No big deal to us since we were relatively new to town, but it caused messes for people who had relationships with doctors outside the system. One year it was equal inside and outside the medical center. I had sinus surgery that year at a different hospital. By that time my share of our medical bills were topping $15,000. Still not a ridiculously high price but too high for us.
I went to talk to a debt counselor. After hearing my story he got up and shut the door and said they were not supposed to suggest bankruptcy but our situation was exactly the reason the law was there. I refused. Maybe not my wisest decision but I felt we owed all we owed except for the stupid interest and penalties for the three credit cards. He suggested if I chose bankruptcy my credit would be okay in seven years. I still said no. I felt morally obligated to pay my bills. I just needed help getting them reduced or a time payment plan set up.
And on it went. About eight and a half years into the illness my husband could no longer stay home safely by himself. The option of me quitting working was not feasible, so we needed to find a nursing home for his care. The one that had a bed at the time was my third choice. The top two had a medical director that was our primary care physician so I thought the continuity with the same practitioner would be beneficial. But they had no beds, so he went to #3. It was fine, as those kind of places go, but week after week he “failed” the test to be able to become a Medicaid patient. He could put the pills in his mouth and swallow them when they were handed to him. He could dress himself in two hours when the clothes were given to him. He could still manage to shuffle to the bathroom. But the time came when he couldn’t do enough of the things on the checklist and so, became eligible. All bills were sent to Medicaid. The nursing home had a fire three days later and 13 patients died. (The story of that night is for another time.) Ironically, my husband got transferred to one of the places we wanted. Once Medicaid took over, I had no more additional costs for him. We stopped taking him for MRIs when it needed to be by ambulance and really, why bother after a while. Hospice got involved and visited him three times a week to provide supplemental care issues.
I stayed at Vanderbilt another 18 months after he died. By that time I had moved to the university side of Vanderbilt and was voted to the Staff Council. My project was to track the amount we shared in our paychecks to pay for our medical insurance (and parking) each year (the payroll deduction increased about 10% annually) while noting our raises each year (about 5%). While I appreciated the benefits, I wanted people to realize that we were slipping backwards all the time. I quit the Council when I was told to stop; that the administration did not want that kind of information shared with the staff who could not figure it out themselves. Meanwhile, Graham, who I had met online in a chat room about 8 years before, asked me to marry him and have my youngest and me join him. He was teaching at a state university in West Virginia, so had a health insurance plan through the state. He was able to add my son as a dependent pretty quickly but I paid COBRA until we got married.
The new plan was challenging. It was a more standard system with copays and deductibles that had to be met and with a cap on lifetime use. Having been exposed to the world of cancer I knew sometimes patients ran into the lifetime limit and care ended, with death soon after. It was horrific to watch knowing a maintenance dose could keep a person alive longer with a decent quality of life. I started allergy treatments again as my sinuses and lungs were getting horribly affected with the pollution in the Ohio River Valley. We had no dental care coverage, minimal eye health coverage, and limited options for specialists because West Virginia is one of those places in the nation that just does not have all the choices other places do.
And then the young one left for college. We had to take out an insurance policy of about $1000 a year on top of all his tuition and fees and room and board for him to access the medical care on campus. Then Graham retired and we made our move to Oregon. Graham had enrolled in Medicare and the first problem we had was there were no primary care doctors in our town who were taking new Medicare patients. I paid $500 a month for a COBRA plan from the State of West Virginia when the Supreme Court ruling on the Affordable Care Act allowed implementation. I was pleased because the time limit for COBRA was going to run out before I became old enough for Medicare.
Working with someone trained in all the offerings, I selected a plan that was good and did not cost “much” It was $550 a month just for me. Since our rate was based on the prior year’s income and we had now retired, we resubmitted about 4 months later with our current income. We wanted to find something in the $350 a month range but instead they enrolled me in the Oregon Health Plan, the expanded Medicaid offering.
I was concerned that I would not get adequate care but was extremely surprised and pleased for the most part. The one issue where the specialist decided not to order an MRI when I injured my arthritic knee (“You have arthritis” he said. “I know,” I answered, ” but it feels different and I can’t walk right.”) and told me to go home. Otherwise, the clinic was friendly, competent and ON TIME.
Last September it was time to re-enroll and our joint income was $200 a month too high to qualify for the same plan, so I had to go back out to the Marketplace and found something for $530. And OHP dropped me in September but I could not pick up the new plan until January 1. I went three months without my breathing meds ($1000 out of pocket per month) and that set me back to a 20% lung function rating. It will take me about three months to climb back to something better. I have copays and a deductible of $2500. I’m partway there….got that MRI for the knee and that cost me over $700 out of picket because I am working down my deductible.
So, the point here was not to bitch and moan. The point is to show that health insurance has ALWAYS been confusing and ALWAYS has been inaccessible to a large group of the American public. Prices ALWAYS go up. Benefits ALWAYS go down.
But I sure enjoyed the Medicaid plan. I would be willing to pay an affordable monthly fee for a plan that allowed me to get care without any copays or deductibles or lifetime limits. THAT was a joy.
This story is for those of you who really hate the concept of universal healthcare:
My last job working full time was for a financial adviser. It was a small business and did not offer many benefits, including health insurance. But that was okay, because my husband had the state employee’s insurance plan through his job at Marshall University. It was restrictive outside of West Virginia. For example, he needed an eye surgery and the best care was in Kentucky. Living right on the Kentucky line, we chose to pay more than drive further to Morgantown.
Once he retired, we fully expected my health coverage would end immediately and were pleased I could pay fully for coverage to continue for two years. As expensive as that option was, it would give me some time to find something else once we moved to Oregon. And I was happy it was coverage by Aetna. I had lived in Hartford for many years and felt that company had good policies and attitudes.
When the Affordable Healthcare Act was passed into law by Congress and approved by the Supreme Court, I was relieved that I did not need to find another 9-5 job with a large company or the state government to get insurance, as all those jobs were an hour away. I started looking into the Cover Oregon plans and determined I would save $100 a month once enrolled.
Meanwhile, using my post-retirement West Virginia insurance, I started establishing relationships with new medical care and filling my prescriptions at the local pharmacy.
Until yesterday, when I went to pick up a refilled prescription and a new medicine that my new doc felt was necessary to replace one causing some blood chemistry issue. The pharmacy told us that our insurance had dropped us. Said they had dropped Graham so they had dropped me. But Graham, being on Medicare now, had never been enrolled. Just me.
We have received no communication from this insurance company. It was past 4:30 eastern time so have to get through the weekend and then we will call on Monday. We paid cash for the medications, thankful they were generics and only double and triple the cost we were used to paying.
This is the way insurance companies act. And now, we will have to fight for the coverage we were told would be offered for two years.
Having lived through Dave’s long fight with cancer, I know very well first hand that often people who are ill, or dealing with someone who is very ill, have no spare energy to fight battles like this. But this is the way our current healthcare coverage system has existed for years. I often had to fight for the promised coverage.