Tag Archives for pain

Why Am I Being Punished?

I’ve been crying on and off since my appointment with my reluctant surgeon a couple days ago.

My friend J went with me to the appointment – she usually does to make sure I ask and get answers to all my questions – and even though she had to go back to work, she was kind enough to sit with me for a while afterward to help me process what had happened over a cup of coffee. She was as confused as I still am, and she was sympathetic because she has gone through this with me since the beginning. I’m not sure how I would be coping with all of this without her support. She called later in the day to see how I was doing. She shared some of her thoughts with me and helped me solidify my plan for moving forward.

J isn’t the only person I’ve spoken with since my appointment. Whenever I have an appointment there is a list of people who, if they can’t go with me, I have to talk with about what happened. Everyone was as confused as J and I were. The responses ranged from angered disbelief to calm measured instruction about what I should do next. And the consensus was – as it has been for some time – that the response to my illness has been poor and that my reluctant surgeon may not be the right surgeon for me.

In between these conversations I cried. I’ve been so overwhelmed and distraught that I asked myself an irrational question that pops up when I lose sight of hope: WHY AM I BEING PUNISHED? I know I’ve done nothing to deserve this illness. But at times like this I can’t keep from shouting out to whoever or whatever might be listening out in the universe and asking what I did wrong and how I can fix it. Sadly, no answer ever comes.

No answer ever comes about why there has been so little movement toward making me better and it scares me. It scares me to think that none of the doctors I have seen have enough interest in working to get me better. No answers ever come about whether my reluctant surgeon is right that if I have the surgery it will cause me more harm than good and I will never be pain-free and it scares me. It scares me to think that she is not considering the pain I have now and how it has increased significantly in two years, and how much more it might increase if she does nothing. No answers ever come about why I keep encountering doctors who are so single-minded and unwilling to hear me when I tell them what is happening in my body. It scares me because if I’m in such close proximity to my doctors and they don’t listen to me then why in the world would the universe.

If the universe is listening maybe that’s why I received a call this afternoon from the office of the gynecologist who figured out I was misdiagnosed. He is also the one who has managed my referrals to other doctors and clinics for treatments. His staff heard my distress and squeezed me into a spot to see him next week. My hope is that he will listen to me and help me figure out the next step in untangling the painful mess that is my life.

 

The Beatles – Across the Universe

My Reluctant Surgeon Keeps Bursting My Bubbles

Yesterday I had an appointment with my reluctant surgeon to follow-up my consultation with the second opinion surgeon. She does not agree with his assessment. She said that she and the second opinion surgeon have “binary opinions” about how to proceed. She still does not believe there will be any positive outcomes to the surgery that has been identified as necessary to remove the growth in my pelvis and restore my health. While he believes the only way to improve my situation is to undergo that risky surgery.

As it usually goes, I walked into my appointment feeling hopeful and I walked out feeling deflated. The only time, since my first meeting with her, that I felt any hope is when she suggested that I meet with the second opinion surgeon to get more guidance about my condition and options for how to treat it. I see now that she expected him to support her position. She wanted him to say that I shouldn’t have the surgery because it would be too risky and could considerably reduce my quality of life. She wanted him to take responsibility for making the decision. She had even told me that he might decide to take over my case after reviewing my charts and meeting me and have her assist during surgery.

But the second opinion surgeon didn’t say or do any of that. So yesterday she offered up the possibility of getting a third opinion. She said I shouldn’t view it as a “tie breaker” – because this next doctor’s opinion would clearly fall on either side – but it would make sure that all perspectives had been considered. How many perspectives are there in a case like mine? I can either have the necessary surgery with good outcomes or I can’t. What more is there to investigate? And what happens if this third opinion surgeon’s views land on the same side as the second opinion surgeon? Will my reluctant surgeon still be reluctant to do surgery? Will she continue to seek out other opinions until she gets the support she wants? Had she even considered that she was sending me to see a doctor at the hospital where I was misdiagnosed to get this third opinion?

When I questioned the rationale behind seeking a third opinion, she offered up the option to move forward with another exploratory procedure. This time it would be a laparoscopy. I mentioned that the second opinion surgeon asked if I had had one. The laparoscopy would be done to take a look into my pelvis to see if the structure growing there could be seen with more clarity than from all the imaging and other procedures I’ve had over the last 21 months (countless abdominal and trans-vaginal ultrasounds, two CT scans, an MRI, a colonoscopy, and two failed fine needle aspirations), and to confirm the growths exact origin. The structure and the origin of this growth have been debated since I first became ill and I was under the impression, until yesterday, that these issues had been resolved. But clearly not, and now instead of moving forward to completely remove it from my body she wants to take another small diagnostic/exploratory step.

Although, I should make something clear. She wants me to consent to this small step – the laparoscopy – with the understanding that depending on what she sees she may go ahead with the more complicated resection. I cannot consent to that. I cannot consent to that because my pain specialists have developed a detailed pain management plan for during and after the resection, which if not followed could leave me even more f****d than I am now. The pain plan must be started before surgery for a successful outcome. So the thought of allowing my reluctant surgeon to do something that would put me at risk of having more pain than I have now scares me beyond words.

After the appointment, when I got home, I contacted my doctor that referred me to my reluctant surgeon. Even though he is not my family doctor/general practitioner – he’s the gynecologist I was sent to because of my misdiagnosis – he has managed all my referrals. He’s the only one I trust to help me make the right decisions about this situation. I’ve requested an appointment to see him within the next few weeks. Whatever he says I’m sure will be better than my reluctant surgeon telling me that if I was her sister she wouldn’t recommend I have the surgery, which amounts to I shouldn’t have anything done at all and continue living with this unbearable pain and taking the mountains of pain medication that barely make a dent. Or worse, that I should make the decisions and absolve her from her responsibilities as a surgeon because she might put on her best, god-like performance in the operating room and fail.

This morning a light went on. My reluctant surgeon is not reluctant. She just does not want to do my surgery. She has not only burst my bubbles she has become the fly in my ointment.

 

Miley Cyrus – The Climb

The Second Opinion Surgeon Has Spoken: Two Years Is Too Long

I recently had my appointment with the second opinion surgeon. My reluctant surgeon sent me to him for a final opinion on what should be done to treat my condition. Before I get to the outcome of the consultation I want to say a few things about this doctor because I believe that who he is and how he dealt with meeting me should be described.

First, he wasn’t just any surgeon. He is THE SURGEON. More than thirty years ago, he graduated from one of the oldest and best medical schools in the country that today “teaches scientific excellence and humanity in medicine, facilitates leading health research, and influences social and health policy.” He then trained in General Surgery and followed that with a specialty in Colon and Rectal Surgery at another historied and world-class university – it was founded before our country was even a country. He completed is training in a prestigious Colon and Rectal Surgery Resident Training Program in Boston.

Since completing his training, the second opinion surgeon has amassed countless accolades. First, he returned to practice medicine at the medical school from which he graduated and within a few short years took on the role of Program Director of the General Surgery Residency Program – imagine the level of talent you would have to possess to have that role entrusted to you so early in your career. Within a few years he was back at his surgical alma mater to fulfill the role of the Program Director of a larger General Surgery Residency Program while simultaneously working as Head, Division of General Surgery – at the hospital where I am now being treated – for a decade. Within that same period he also became Program Director Residency Program in Colon and Rectal Surgery and still holds that role today.

The second opinion surgeon is a Member of the Board of Directors of the American Board of Colon and Rectal Surgery and is an Examiner for the American Board. He has served as an Associate Editor of Diseases of the Colon and Rectum and an Associate Editor of the Canadian Journal of Surgery. He has served as the President of the Canadian Society of Colon and Rectal Surgeons and as the Chair of the Royal College of Canada Specialty Committee for Colon and Rectal Surgery.

If these years of experience and knowledge as a surgeon and professor of medicine doesn’t put him at the top of his profession, then I don’t know what will. Nonetheless, with all of this backing him, he was unassuming and very human. He bounded into the examination room followed by four residents. I’ll confess that this was the part of the consultation that unnerved me: four extra sets of eyes and ears acting as witnesses to the history of my illness, all its wonderful symptoms, the side effects of medications, all the results from diagnostic tests and scans, and failed procedures. But neither they nor the second opinion surgeon were fazed by anything I reported about my likely rare congenital condition.

At the end of the Q&A, the second opinion surgeon made a number of declarations. First, two years is too long for me to live as I have with so much pain and such low quality of life. Second, it isn’t feasible for me to continue taking all the medications I need to manage the pain long-term. Next, my reluctant surgeon has taken a conservative approach to treating me by exploring all non-surgical options, but “the time for conservatism is over”. And finally, the thing in my pelvis that is the source of my pain has to come out. He looked up from his note-taking and asked if I agreed with his list of assertions. Of course I said yes. Truthfully, at that moment he could have told me the earth is flat and I would have agreed.

There you have it. The second opinion surgeon has spoken. I will have surgery. The thing living in my pelvis must be removed – regardless of the risks. My reluctant surgeon educated me about the known and warned of possible unknown risks and he agrees there are significant risks inherent to a resection, but leaving me as I am is not an option. Besides, there are risks with every major surgery. The hope is that removing this interloping growth will end my pain. The fear is that it won’t. Whatever the outcome, at least once it’s out they will finally be able to say with certainty what it is.

 

David Bowie – Changes