Tell Your Medical Story: Share and Compare

I am a patient.  I am also a wife, mom, nana, aunt, daughter, sister, friend and a myriad of other things.  The patient part of me is a direct reflection of how I am able to be all other things. When the day is filled with pain, or bed rest, medications or appointments I cannot be much else.  It means someone has to be with me, drive me, make sure my family is fed dinner, do my chores for me and that I cannot give my whole self to life.  What being an eternally sick person meant to me, was isolation, depression, dependence and fear.  No one understood fully what I felt.  I became the sickly one.  My body changed from a healthy and strong one to an overweight, incapable blob.  There went my confidence, my drive, my personality and most of what made me, me.  Nobody even knew why. 

Then came Oscar, the tumor.  Yes, I named a tumor.  The reason I focus on this one thing is simple, “he” changed me forever.  Technically he was a Lipoma, a non-cancerous growth in my right abdomen.  My doctors tell me I could have had it for all of my life or just a decade or so.  I know when he reared his grouchy head though, five years ago in the DMV office.  My daughter was getting her driver’s license and I got up to walk around.  All of a sudden my right side felt like someone had put a finger into my body and was wiggling it around.  It hurt like no pain ever before, strange and powerful.  Then I felt that same pain many more times.  Without insurance, I was not able to just go to the doctor and be checked out.  So I waited, pulled myself up, as best as I could, and did what I had to do.  I fought that pain and gave in to it too. 

Sometimes, when I fell down stairs or broke a bone, I got a trip to the ER; I almost always mentioned the mystery pain.  I went to the hospital often from fainting or migraines and I even had reasons to get ultrasounds and CT scans.  I never got an answer to the question, ‘What is that pain in my side?’ I had ovarian cysts, I had Irritable Bowel Syndrome or I was hallucinating.  Whatever!  The scans showed a mass and then it was explained away or never mentioned to me.  Nobody ever said I might have a tumor, to me.  Radiologists saw something but were very unclear as to what.  I was referred to specialists I couldn't afford and it always came down to needing further tests. A gastroenterologist said I needed fiber and maybe I had a problem with my lower bowel.  See a Colol-rectal doctor if it continued.  It did, for a long time. I had my uterus removed, because of prolapse and still had this pain.  It hurt more and more but I stopped talking about it, chalked it up to gas or constipation and went on. 

People around me were thinking I had hypochondria, they didn't say so but I saw it.  I had insurance for a while and I also started having severe rectal bleeding about that time.  My ER visit revealed that I had a tear in my anal canal, very close to the colon.  I got to see a really good colol-rectal doctor and had surgery to repair the tear.  It made no sense, for me to have the tear or the massive arterial hemorrhoids he found during my colonoscopy.  That surgery was hell.  The recovery was nasty, bloody and very debilitating.  The bleeding continued even afterward and I figured I just had new hemorrhoids and used my medicine to deal with it.  Never did it help but I did was I was told.  My last visit with that doctor, he told me again to get an MRI.  About that time, my insurance changed and the new company would not pay for a MRI without a suspect reason, a possible problem.  In the midst of all this my blood pressure became a problem and more medication was added.  I gained more weight and felt worse.  Eventually I had to be put in bed rest, just to keep me safe from the side effects of all my illness and medication.

Then came June 2010; my cousin was moving back to Georgia.  She has cancer and I was determined to stand beside her and fight her disease.  I felt that I could help her find better care, help her live her daily life and be her rock, as she became better.  My husband went to Ohio, to help her and her family move and I stayed behind, again.  When she got here we went full force.  We saw her new doctors and she stayed with us until her new home was ready for her.  I still had my pain but I had a goal and that made me stronger.  As we talked about our lives, as patients, I discovered that I was living a less active life than she was, with Stage 4 metastatic Thyroid Cancer.  There was one glaring difference, she had really good insurance and had a diagnosis. 

My back began developing a mass and the pain that had been in my side for all those years began to move to include my back too.  Then I could not help my cousin; my one goal had been taken away.  Think about that for a minute.  My ONLY goal was to help her because I had no goals for myself.  Forgotten were my dreams and goals, no longer did I see a long life for myself.  I really thought I was going to die, young and misunderstood.  I had the ability to help my children see their own goals, to live through them and all I could do was watch, living vicariously through those around me.  That is pretty sad for a 41 year old, huh?

For some reason, I always had something happen on holidays.  I ended up passing out for no reason, falling down stairs, having a panic attack, etcetera on or around a special day.  My sickness had screwed up almost every “happy” day for years.  As July rolled around I was in a lot more pain than usual.  I just plain hurt.  My blood pressure was bad, swelling was out of control, I was fainting almost every day and I would just lay in the recline position, hoping for relief.  July 4th came and I was crying in pain.  We had one of our granddaughters over and I could not even begin to play with her.  I was determined not to mess up the day for everyone else and refused to go to the hospital. 

Finally, my husband had our son come get the baby and I went to the ER once more, but I waited until 3am on the 5th to go.  I saw a doctor that had seen me several times and he felt that I might have kidney stones.  Well that required a CT scan on my belly and what he saw was far from kidney stones.  I had a very large mass in my right abdomen.  It was Oscar, my tumor.  At first he was about the size of a soft ball but he was growing, rapidly.  The next few weeks were a blur to me.  I was put on strong narcotics while my husband and my doctors found a way to get Oscar removed.  Money was the trouble, plus my surgeon had to be prepared to be on call for me afterward.  This was a big deal.  I guess I knew that but all I could think was I had cancer and was going to die.  My wishes for that finality were made known, down to my epithet.  My life was over. Done!

Well you know that I did not die as I am writing this today.  Oscar was removed and blessedly was benign.  I am one week into my life again.  I went into the hospital for surgery on July 30, came home six days later and spent 8 weeks in bed rest.  I am terrified.  Once I was the happy wife and mother that went to every ball practice and school affair.  Now I am the recovering person.  Who is that?  I still have other medical issues but they are minor in contrast.  Most of my major trouble, in the last five years can be directly or indirectly traced to a benign little tumor.  Had it not grown large enough to reach major organs, and feed off their blood supply, I would have continued to suffer.  You see, until then it was not threatening my life.  That means it was not a true emergency, therefore I was never diagnosed.  I was unimportant; I was just any old patient.