Today one of my dearest friends is having surgery. She told me not to worry, but of course, I’m worried. She’s one of the people who have supported me through my illness since the beginning. She has come with me to doctors’ appointments – I’ve lost count of how many; she has taken me to and been there when I’ve woken up after many of the procedures and surgery I’ve undergone; and she has opened her home to me and cared for me.
We became friends many years before my illness, and the decades that separate our ages have become irrelevant. She is one of the few women in my life that I trust wholly to guide and advise me because she has lived an incredible life in which she has accomplished incredible things, I respect her tremendously, but above all, she is always honest – even when it might hurt. We have shared hours upon hours of laughter – the kind where you almost pee your pants – and she has opened my eyes to many truths about life. With just a few words, she gives me strength to face difficult situations, and her unassuming nature always puts me at ease. Truth be told, she is important to me in ways that my mother should be.
I can’t be there for her physically, so today my heart and mind are with Z and I am sending her positive energy to support her through, what she says is nothing to worry about.
My surgeon received my final pathology report. None of the organs or tissues removed showed any signs of cancer or any other diseases that need monitoring. The mysterious growth is less mysterious now because it’s not the congenital disease initially believed and it’s not a cancer. Now, it is more clearly a cystic growth that my doctors view as incidental to leading them to discover my chronic pain condition. The chronic pain is now the mystery that requires solving.
To solve that mystery I will go to monthly appointments at the pain clinic. I will also work to taper my pain medications to a lower dose based on what my body can bear. In my last meeting with my pain specialist, we discussed trying acupuncture to see if that gives me any relief. She’s open to trying anything, as am I, which does not require another invasive procedure but may deliver some positive results.
The strangest part about all of this is that my family and friends, with whom I’ve had the opportunity to share the news, might actually be more relieved and happy than I am. I don’t mean that I’m not happy that I don’t have cancer. I mean that I’m disappointed that after two years, so many invasive procedures, including this major surgery and an ocean of pain medications, I still don’t have a final diagnosis. I’m still unable to perform the simple act of going for a walk without suffering painful consequences and I’m still stuck inside my approximately 700 square feet of space most days because of this pain. Even though I know it would have been close to miraculous for the pain to be gone so soon after surgery, I want it gone.
Just over a year ago, I decided to approach my condition as if it was something I had to live with long-term to avoid this kind of disappointment. However, if I’m being honest that wasn’t a real decision or commitment to a new way of living. I was still bargaining with the universe, even if I didn’t want to admit it. I was still desperately clinging to hope that there would be no permanence in this situation. I know this still may not be permanent, but I’m not sure it’s wise for me to grasp so firmly, to hope about what might not be if my pain mystery remains unsolved.
Instead of falling on either side of the line of what could be permanent, I’ve decided instead, to take the approach of breathing a little easier for now. I’ll continue breathing easier unless the day arrives when breathing easy hurts too.
It’s been four weeks since I had surgery. By all accounts, the surgery was a success. It was a success because they didn’t have to remove any of my bowels, especially my rectum. What they did remove was the mysterious growth that measured about 3cm x 3cm and was attached to my rectum but not growing out of it, and still has yet to be properly named. They also removed the organs the mysterious growth damaged, which were both of my fallopian tubes. In addition, there was a large cyst growing quite happily on my right ovary, which the surgeon removed without damaging my ovary. The surgeons sent everything they removed from my pelvis to pathology for testing. Since I haven’t received any calls requesting that I must urgently meet with any of my doctors, I’m assuming either they haven’t found anything too unusual or they still don’t know what the mysterious growth is.
When I’m finally healed from the surgery, I will have a vertical scar starting just below my belly button and extending down my pelvis measuring 10cm; or 3.9 inches for you non-metric converts. I’m grateful it’s that small because it would have been much larger if any of my bowels had to be removed, and I could have had an ileostomy attached to my abdomen. However, in place of those things, I will also have scars on my abdomen from the allergic reaction I had to the white, adhesive surgical bandage they placed over the steri-strips used to hold my incision wound stitches together. The allergic reaction I had caused my skin to develop large blisters around the edges of the bandage. I now have scars that show an outline of where the bandage was. I can only hope the scars will fade in time.
Apart from the allergic reaction to the surgical bandage, the big disappointment is that my pain is not gone. When I say that I’m not referring to the surgical pain, which is almost gone, I’m talking about the pain I’ve been living with for the past two years. The first signs that it was still with me came on the day they removed my epidural. Within a few hours of it being removed the old leg, hip, and back pain came back with a vengeance and my blood pressure jumped above 160. The nurses called the doctors from the Acute Pain Service to get my pain down to a level I could bear. That took a while and the whole time they were working on me all I felt was fear. Fear that what the doctors predicted prior to surgery was coming to fruition: I could have a major pain flare after surgery that could not be controlled and I might never be pain-free.
As I’m writing this my legs, right hip, and right lower back are hurting. I’ve been having this pain to varying degrees since they removed the epidural and patient controlled anesthetic (PCA) pump. To compensate for their removal and my body’s response to the surgical pain or body trauma as some doctors prefer to call it – at least I’m assuming these are the reasons – I am now taking pain medication at a dose that is just over three times higher than what I was taking before surgery. That scares me more than the pain. It scares me that before surgery, I was taking a significant dose of pain medications that didn’t always ease my pain and now this higher dose is barely doing the same.
My pain specialists are holding on to optimism. They believe that time will be my healer. They have me working on tapering the doses of my pain medications to a point where my pain is managed with the lowest doses possible. Until then I will try to live as normally as I can, which now includes accepting help from others without resisting, and monthly appointments to the pain clinic to monitor my progress.
My Small Surrenders 