“Brad, do you think that’s just an ingrown hair?” I asked my now fiance, while sitting poolside at the W Hotel on his birthday, February 21.  I had this weird little “lesion” on my left shin for about three weeks at that point and just chalked it up to that.  “Yeah,” he said.  “I’m sure that’s all it is.”  Little did I know what that little “lesion” was about to set off.

Flash forward to Monday, March 21.  Exactly one month later.  Weird little lesion still on my shin.  I was at my gym – my happy place – bench pressing. One of my most favorite exercises.  I was pressing my heaviest weight to-date and using lots of leg drive, as we are supposed to do.  As I stood up to walk over to the next exercise, I felt as if I had pulled a groin muscle. I placed my hand on the area just left of my groin and sure enough, I felt a ball under my skin.  A weird, round lump.  I went to the gym the next day for what would, unbeknownst to me, be my last workout… in quite a while.  I figured I had pulled a muscle and took it a little easier than normal and then decided to skip the rest of the week and let it heal.  That weekend, Brad and I took the kids up to Universal Studios in Orlando.  “Brad, I think it’s a hernia,” I told him as we walked from one roller coaster to the next.  It was now protruding a little and was so tender that if I brushed it up against the bathroom sink by accident, it would send a little shockwave of pain.  

Upon our arrival back home, I told my ex hubby I thought I had a hernia. He instantly asked his good friend, Jeff, to call me, as he had suffered a recent hernia as well.  Jeff recommended I see his hernia specialist in Palm Beach and so, there I went.  “Nope, that’s definitely not a hernia,” the doctor insisted.  “So WHAT is it??” I incredulously asked him.  His guess: a very swollen lymph node.  What does that mean?  Where to next?  A gynecologic oncologist apparently.  Now, I am not stupid. I know exactly what an oncologist does.  What’s funny to me now is that I just did not connect the dots at all about why I found myself sitting spread eagle on an exam table in his exam room just a few days later.  

After looking at my new friend, Mr. Lumpy, and doing an internal exam, these exact words came icily out of his mouth, “I think it’s lymphoma.  I want to remove your IUD today and take blood, then have you go to a diagnostic center for both an internal and external ultrasound, and schedule surgery to remove your lymph node and to perform a D&C.”  I sat there in shock.  What did he just tell me?? I have lymphoma?? He asked if I had any lesions on my body to which I pointed at my “ingrown hair” and after he glanced at it, he quickly dismissed it. I asked him if it could be related to our new cat.  He instantly rejected such an idea.

I texted my fiance, my sister, and my ex hubby to tell them the news.  Everyone fell into place: fiance said he would leave work and be right there, sister booked a red eye plane ticket for that evening, and ex hubby said he would keep the kids so I could wrap my head around the whole thing.  He and I agreed not to tell them anything about the possibility of this being cancer. After scheduling my surgery for the very next morning, I was sent to the hospital to check in and do more blood work. From there I drove to the diagnostic center for both ultrasounds.  All while hysterically crying.  

The next morning we checked into the hospital at 5am sharp.  After a successful D&C and lymph node removal surgery, we were beyond relieved to hear that the biopsy of the node was negative.  “But it could still be lymphoma,” the doctor said.  They would be sending a portion of my lymph node off to another lab for a final biopsy, but so far so good.  The next day, I reported to Quest for more blood work and the day after that, I went back to the diagnostic center for radioactive substances to be pumped into my body via IV for my full body PET scan.  

The next week, as I was starting to slowlllly feel more like myself, a bulge started to form by my incision.  It was getting bigger, redder, bruised, and angry.  I was worried it was getting infected.  I took a pic and texted it to the oncologist’s assistant.  She begrudgingly said I could come in if I WANTED to and she would aspirate it.  Yeah, just what I wanted to do…but off I went back to their office.  Once I was back on the exam table, she walked in and started complaining there was no betadine and no cotton pads.  She said all the supplies she needed were not there.  I sat there in disbelief at the disorganization of this place.  While she was finally prepping me, I asked if any of the test results came back yet. Unfazed, she looked in my file, grabbed two pieces of paper and handed them to me and said, verbatim, “Here, you can read these.”  My eyes frantically searched the papers for any clue but it was all in medical-ese, a language I do not speak.  I told her I have no clue what these mean, to which she shrugged and said the doctor will go over them with you at your follow up… three weeks from then!  I started crying and told her that I was petrified. That this wasn’t a Vitamin D deficiency test we were talking about…but CANCER.  I left that office aspirated and beyond aggravated.

Of course, less than 24 hours later, the sac began to fill right back up. I refused to go back to that first doctor’s office so I called my new guardian angel, Jeff, and asked him for more guidance.  That week, Jeff sent me to another gynecologic oncologist who was everything the first guy wasn’t.  He was compassionate and told me I needed immediate care to aspirate my seroma and he was sending me to a radiologist who would use guided ultrasound to drain the fluid. This time, we sang My Seroma to Mr. Lumpy, to the tune of My Sharona in an operating room complete with hospital gown, hair net, blood pressure and heart rate monitors, ultrasound machine, four nurses, and a partridge in a pear tree.  (My seroma filled back up within hours of leaving the surgical center.  Apparently it likes me).

The new oncologist also sent me to an Infectious Disease doctor to look for other infections, since clearly something was causing my lymph nodes to swell.  She was very empathetic and knowledgeable and said I needed more blood work done. So the next morning at 6am, I got pricked yet again for all the tests she had ordered.  A few hours later, I headed back to the diagnostic center to lay in the tube one more time and had my CT scan (after drinking the most vile barium drink ever) because after the new oncologist read my PET scan report, there was now some other suspicious “activity” on my right ovary/fallopian tube.  Fab!  

I dropped my CT scan disc off for my new doctor the next morning and finally had the breakdown that was bubbling just under the surface. I cried to his Physician’s Assistant about how it was my daughter’s bat mitzvah in just 48 hours and that my seroma was so huge and painful.  And how scared and frustrated I was. Did I have cancer??  She immediately sent an SOS group text to the radiologist, the infectious disease doc and my new oncologist.  They decided I should go back to the radiologist that day to have Mr. Lumpy aspirated for the third time and to have a drain put in.  NOT TWO DAYS BEFORE OUR BAT MITZVAH WEEKEND! So we decided to wait until that coming Monday – after all of the festivities were over – and that yes, it would be disgusting (especially for a squeamish gal like me) but it would feel so much better.

All the while…we are still waiting for the final pathology report to come in from my surgery. Which, to date, it has not…

The next night – the night before our big weekend, the new oncologist called just as we walked out of our meeting with the Rabbi at our synagogue.  He wanted to let me know he reviewed the CT scan but couldn’t determine exactly what the activity was. He was going to bring the CD to the hospital the next day and review it with the Head of Radiology. Not exactly the answer I was looking for but at least he didn’t say he knew it was something bad.

The next night, as we were walking out the door to kick off the weekend’s festivities and meet our entire family for dinner and temple services, the doc called to say that my scan looked “unimpressive.”  I have never been so thrilled to be “unimpressive” in my whole life!  He recommended I come in for another ultrasound in four weeks to compare the images to the first ones we did.  WONDERFUL NEWS!  Except later that night, as I was sitting on the couch in my pjs, I noticed liquid starting to drip down my leg.  Liquid coming out of my incision.  I was leaking! One frantic call to my lovely radiologist and after slapping waterproof bandages all over my groin and thigh, I went to sleep praying my leg would hold together the next day for my daughter’s big celebration.  And it did.

Monday morning, after our whirlwind of an amazing weekend, I went back to my radiologist and this time, after she aspirated it yet a THIRD time, in the same sterile operating room, she inserted a drain into my leg, which is still dangling from my groin as I sit here typing this post.  Two weeks later.  It will come out after I have 10cc’s of fluid or less for three days in a row.  OH, and no showers allowed while the drain is in.  Only sponge baths so it doesn’t get infected.  Fun times!  

From there, I drove to a follow up with my infectious disease doctor.  She drew more blood to send to the labs to confirm what she was thinking.  Guess what???  She thinks it is CAT SCRATCH FEVER.  Yes, from the kitten we got in January.  It wasn’t an ingrown hair.  It was most likely a scratch from the kitten that infected my lymph nodes and by the way, looks JUST LIKE LYMPHOMA and is treated with antibiotics. It would’ve been nice to just have a needle biopsy to check before this whole surgery-gone-wrong circus!

My surgery was exactly six weeks ago today.  For a month and a half, it has affected me physically (not a lick of exercise since March 22, walking around with an extra painful “boob” on my leg), emotionally (how I still have enough fluid to create tears, I don’t know), mentally (I hid this from my children until recently, which was the hardest part), socially (I have been in a committed relationship with my couch and my new habit – knitting!), financially (over $7k so far) and I still don’t have final results. 

While this has been a frustrating experience, there are some important lessons to be learned. First, when embarking on any type of medical journey, you must be your own advocate. If something doesn’t feel right, fight for more information and better care. And second, do not stand for second-rate care. Women, and especially women of color, are often dismissed by medical professionals. This article discusses how doctors often downplay women’s medical concerns. If you think your doctor isn’t taking you seriously, find a new doctor who will. Immediately. And finally, insist on receiving timely updates from your doctors. No one should have to wait over four weeks for a proper diagnosis.