This photograph was taken, a complete fluke considering I did not realize what the prompt was for this week, at the Salvador Dali Museum this past week. This is the spiral staircase that takes you between the three floors of the museum. It gradually narrows, slowly winding to an end, just under the glass dome. It made me think “Stairway to Heaven”. It made me think about the way things have been going in my life lately. Things have been looking up and then, leading nowhere real fast. It’s been a very confusing time in my life. I have been in and out of the hospital three times in the past three weeks. Little pieces of me being removed each time. Doctors saying one thing, doing another, forcing me to lose control over the one thing that we should all take for granted: the ability to have control of our own bodies. I feel like I am on an upward climb…but repeatedly hitting this glass ceiling that allows me to LOOK towards the future, but not allowing me to get there. It’s frustrating, to say the least. I want to be somewhere that I can’t get to. I am trying to remember that there are people out there that have it a lot worse than I do. A LOT worse. I don’t have a fatal disease…something which was a possibility several weeks ago. What I do have is a disease that is slowly overtaking my reproductive organs, literally encompassing them into this big, woven web of scar tissue, forming a barrier around what does need to be removed. It is like having to drill through 20 feet worth of solid rock to get a poisonous snake out of your garden. It should not take so much work to rid yourself of evil, the evil here being one of my ovaries that encompassed in a man-eating tumor. This cystic tumor is three times the size of my poor, overworked ovary, causing me incredible pain. Yet, the pain that I have to endure in order to remove, well, the pain…it’s almost ironic.
To get rid of pain, you must endure worse pain? Somehow, it just seems medieval.
This past Thursday, I had a laparoscopic surgery to drain and/or cut the cyst off my ovary. Upon entry, the doctor discovers that I have webbing, scar tissue, called “endometriosis” covering my entire abdominal cavity. It is everywhere. It is “stage 4″, which is apparently the worst you can have. One of the last things I remember the doctor saying to me before the surgery is…”You know, you should have told us you were having pain before the FIRST surgery. We could have taken care of it then.”
I had no words. None.
This is the equivalent of an “I told you so” from a doctor. And I would be lying if I said it didn’t hurt.
I had told him, for weeks, about the pain I had been enduring. My husband and I had just called the doctor two days earlier to tell him that I was in the emergency room with excruciating pain just the day before. He cut away a portion of my uterus, a bunch of fibroids and polyps. He did a D & C to check for cancer (none) and then, abladed my uterus so that I could no longer bleed to death nearly every month. With every passing period, my red blood cell level kept decreasing. I am severely anemic. However, the pain. The pain from that ovary that they never removed remained and I felt this was all for naught. That caused an extreme amount of mental duress for me. This past week, I came back into the doctors office again, the pain absolutely maddening and the depression, deepening.
Doctor makes that remark from earlier and then, gives me 3 hours to let me know that A) your ovary has just blown up, B) you’re going under the knife again for emergency surgery and C) this time…This Glorious, Wonderful Time…we will be removing that ovary. The bane of my existence. And life shall be good again.
Of course, this is when I find out about my endometriosis. The moat of impossibility that is encompassing the remainder of my battered uterus, one innocent ovary who is likely wondering “what the hell did ‘I’ do to deserve this?”, and of course, the culprit, the right ovary who…had she not spoken up in the form of extreme pain, would have never alerted me to the presence of the EndoMonster, eating my insides.
So into surgery I go, tube into the belly. Soreness extraordinaire when I arise the next day. Complications. Stress with my already stressed out husband and an argument that never should have taken place due to a misunderstanding. But it’s okay. Because now, I have been made to understand that despite the doctor’s best Black and Decker power tools, the wall of the EndoMonster could not be penetrated and the force within, the control center of pain, that God forsake ovary…still remains. He could not get through the enormous amount of scar tissue surrounding it.
There are questions that need to be answers, research that needs to be done, phone calls to be made. But, in the midst of all this, there was a birthday to celebrate. Two days after that emergency surgery, I had pre-planned an amazing weekend with my husband to celebrate his 37th year on this planet, 12 of those in my life. Thusly, we went to the Dali Museum where, to bring this full circle, I took the picture that captured what I am feeling. The feeling of moving up and yet, going nowhere. We took a helicopter ride over the beaches in Clearwater. It was scary, exhilarating and amazing. We did a lot of laughing, a welcome distraction from all the tears as of late. Then, we went to an out of the way Indian restaurant to burn our mouths on the finest curry based delicacies they had to offer. We stayed i a hotel, also a welcome reprieve from all the time we have been spending at home, only to wake up to a brand new horror the next day.
My belly, never flat…but never sticking out further than my size F breasts, was completely engorged, swollen and bloated. It was painful. Extremely painful. Tender and hot to the touch. By later that morning, I could no longer fit into my pants. It was then I found out that during the laparoscopic surgery, a woman is pumped full of carbon dioxide to both shrink and dry out the organs in the abdominal cavity and to expand the area in which the doctor has to work. It is quite common, apparently, for the sudden expansion to occur a few days after surgery as my husband and I read horror story after horror story from dozens of beleaguered women who have gone through this process. It is also, from what I understood (and concur with) extremely painful. By late Sunday night, my belly was swollen to the point of looking equally as pregnant as my sister in law who is presently 9 months pregnant with twins. I was scarcely able to breathe as I was babysitting my grandchildren for the night. I could not lift them and eventually, I could not lift myself without assistance.
We called the doctor this morning who wanted to see me “right away” as “that kind of pain and swelling is not normal”. Not normal? We read literally hundreds of stories that said quite the opposite. This pain and swelling IS rather normal for this surgery and for some women, the swelling and pain can take weeks to go away. Once again, I am questioning my doctor…and questioning myself. I am normally a fabulous advocate for those who cannot speak for themselves in times of health crisis. Yet, I had scarcely enough time to be able to read and understand what is happening to me. My husband, God bless him, is doing what he can to give himself an education on the topic…baptism by fire, if you will, but he can only do so much.
I see my doctor again tomorrow morning and I think, at this visit, I will be releasing him as my gynecologist in lieu of someone who cares enough to be able to give me rational explanations for what is going on with me. I want to know why this disease was not discovered years early by the barrage of tests I have taken for other gynecological ailments I have suffered through, such as interstitial cystitis and cervical cancer. I want to know why three gynecologists, two urologists and one family doctor never thought to look for something as common as endometriosis knowing my history of painful periods accompanied by excessive bleeding.
I want answers. I deserve answers…but my surgeries are coming faster than the questions are forming in my head.
So, when I looked at the spiral staircase, leading upward toward the glass ceiling, allowing in the sunshine and the promise of something brighter, but never quite allowing you to touch it, I thought…there it is. My life, in a photo. This is where I am right now. Looking skyward, with no discernible means of getting there…
just a long climb spiraling rapidly to no where at all.