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Gratitude and Creativity: Light Up With Happiness

This past week was a good one – all things considered – with the news of a surgery date making it even better. What made it good to start? Last Tuesday, I went to stay at the home of my adoptive Aunt C. It’s the first time since I was about twelve that I’ve spent any extended time with her, but it felt like no time had elapsed. It’s not that I haven’t seen her at the odd holiday dinner or picnic over the years where I’ve received tight, warm hugs overflowing with affection that showed how genuinely she cares for me, but being in her house and having her spoil me for a few days was nice.

When I was a little girl, I used to spend weekends at Aunt C’s house. Sometimes the excitement of the weekend started early. I would get to take the subway by myself to meet her when she finished work, at a designated place, in the central train station downtown. Then we would take the train out to her house in a suburb outside the city. At her house, it would just be the two of us. She would make me my favourite meals and desserts I loved. Aunt C would take me to movies; we would go shopping; or we would just hang out around the house. On top of that, she would treat me to little presents that would light me up with happiness. My time with her was always so happy – and because I believed she was perfect – I once asked her to adopt me.

Light Up With Happiness - Shadow

Light Up With Happiness

I felt some of that happiness this past week, as she showered me with attention, care, and concern for my poor health. There was also a lot of laughter. So much laughter, that at times my pain increased, but I didn’t mind because it was good to laugh with her. We spent some time talking in detail about things that have happened in both our lives that it wasn’t always possible to talk about with crowds of people around at family events. At one point, I questioned myself about why I never made more of an effort to keep Aunt C close in my life, but I know the answer is my mother and the ever-present fear I had about betraying or hurting her. In some ways, it was a get to know you again week, and in others, we just picked up from where we left off years ago.

It won’t be too long until my next visit with Aunt C. Apart from wanting to keep our renewed connection strong; she offered to take care of me after my surgery. I already have plans in place for my immediate aftercare, but I’m grateful for her offer and I will go to stay with her at some point during my recovery. I’m also grateful for the chance to reclaim and rebuild a relationship that was important in shaping my understanding of motherly love. Although, most of all, I’m grateful I’m in a place, emotionally, where I can accept the love she offers to me.

 

Lee Ann Womack – I Hope You Dance

I Have An Important Date

Yesterday afternoon, I got great news. My new surgeon made room for me in his summer schedule, which means I’ll be having surgery sooner than I expected. I am scheduled to have surgery on August 11th. I didn’t know how to react to the call. I’m happy that after such a short timeline from his second opinion in April to my follow-up consultation at the beginning of June that his conviction about working to improve my quality of life has come to fruition. But, my surgeon’s administrative assistant felt compelled to tell me that I didn’t have to take the date if it’s too soon or doesn’t work for me for any other reason because she recognized how stunned I was by the news. I assured her there is no reason to reschedule me. I think waiting two years to have someone, anyone, take decisive action with the intention to get me better is long enough.

I’m also full of anxiety. I’ve had surgery before, but this surgery is the biggest medical procedure I’ve had in my entire life. I’ll be on the operating table for three hours – or longer – as at least three surgeons work on removing the growth that is invading my pelvis and repairing the damage it may have inflicted on multiple organs. The known possible outcomes that fall on what I’ll characterize as the negative plane of the spectrum could drastically change my life. Not to mention, my surgeon predicts a minimum five nights stay in the hospital post-surgery – if everything goes well – that could turn out to be longer depending on what they find or how much of my rectum he must remove. Yet, I know that there is a positive, bright side of the same spectrum that could mean the end of my pain and the beginning of what’s next in my life, now that my eyes are open to the suffering that exists in the lives of so many people because of chronic pain and chronic illnesses.

Still, mixed into the confused pool of emotions I was excited enough to call or send messages to all my friends and family who support me through this illness at every turn – good or bad. Everyone I connected with was very happy to hear the news. They’ve all been waiting with great anticipation since I told them I would most likely have a surgery date for the end of the summer. Those who expect to be involved in my aftercare immediately reminded me of the commitment they’ve made to me to help in whatever way they can when I’m released from the hospital. Some made even grander gestures of support, offering to take me into their homes for my entire recovery. All of this continued support means everything to me and I know I’ll never be able to repay it, but I also know that without it I wouldn’t have made it this far.

I have an important date and my hope is that when it ends I’ll be on my way to better health.

 

Mr. Mister – Broken Wings

The Second Opinion Surgeon Takes Center Stage

I was having a chat with one of my online blogging friends, All Things Chronic, a couple of days back and I realized I never finished writing the post I intended to about my impending surgery. A few months ago my reluctant surgeon sent me off to get a second opinion with the best colorectal surgeon in the city. After he advised her that I needed surgery to remove the mystifying growth in my pelvis to improve my quality of life, she chose to ignore that advice and wanted to send me for a third opinion with another surgeon who she called her “peer” at the hospital where my misdiagnosis nightmare started.

When I told her I wasn’t comfortable going back to that hospital for any reason – not even to have impacted earwax removed – she offered to perform a laparoscopy to further investigate the nature of the growth. I was more than a little unnerved by that proposal because she also added that if while she was poking around in my pelvis she determined that it was definitely a colorectal issue, she would then move forward with the larger surgery – a laparotomy. The laparotomy is the larger pelvic incision needed to remove the growth and do the necessary resection. The problem with this approach is what would be missing. She would not be able to follow the surgical pain management plan developed by the pain clinic to make sure I didn’t experience unnecessary pain and give the doctors a better chance to manage my post-surgical pain. She also didn’t have a surgical team identified, beyond herself and her resident, to deal with any unexpected issues that might come up during surgery. The final thing she said that really plummeted my comfort level was that if I were her sister she wouldn’t recommend that I have the surgery. Think about that for a second… The question that came to my mind was would she want her sister living with the level of pain I do on a daily basis for the rest of her life.

I left that appointment feeling the most hopeless I have felt since this whole ordeal started. As soon as I got home I called the specialist managing my referrals and got an emergency appointment to see him a few days later. I explained the situation and my fears and he expressed his own concerns about my reluctant surgeons proposed approach. The main concern being that if she only performed a laparoscopy and scheduled the resection for a later date I would have to go through two surgical recoveries, and my pain response couldn’t be predicted. He asked what I wanted to do and said he would support any decision I made. I told him that I wanted the second opinion surgeon to be my surgeon. He put things in motion and all I had to do was call the second opinion surgeon’s office to schedule a follow-up appointment.

The follow-up appointment was about a month ago. The second opinion surgeon agreed to take me on as his patient and immediately got to work on my surgical plan. While I was sitting in the consultation room, he looked at my imaging results again and determined that the mystifying growth is in a place on my rectum that should not require a resection that involves the complete removal of my rectum. He did make one caveat, that imaging doesn’t always give a full picture of what he might find during surgery, but fifty percent of the time, he does find good surprises. If he has to remove a large section of my rectum, I will have a temporary ileostomy inserted. If he must remove my entire rectum, I will have a permanent one. The decision will be made depending on how low the growth actually is to my pelvic floor. However, his optimism about what he sees in my imaging boosts my hopes that even though this surgery is complicated – no bowel surgery is sterile and I could have unexpected bleeding – I have the best surgeon doing the surgery.

The second opinion surgeon also identified the doctors that would be part of the surgical team. There will be a gynecologist – my referring specialist – in case the mystifying growth has caused damage to the right hemisphere of my reproductive organs and my right fallopian tube and ovary must be removed. There will be a urologist, who I most likely won’t meet before surgery, to deal with any damage to my bladder or ureters. If the second opinion surgeon runs into any other unexpected issues during the three hours he booked for the surgery, there will be a pool of doctors he can draw from to join the team while surgery is underway. He will also follow the pain management plan from the pain clinic.

My Hope Is Blooming

My Hope Is Blooming

I don’t have a date for surgery yet. It will most likely happen at the end of August or beginning of September. Although this will be a life altering experience, I feel hopeful. Now I feel secure that whatever the outcome, I’m in the hands of the best surgeon for the job, and he is optimistic and hopeful that I will come out of this with positive results. He was also kind enough to give me his email address in case I have any questions in the meantime. I hope that the positive results he wants for me includes the elimination of this pain I’m living with every day, but I know that realistically that might not happen.

 

Coldplay – Fix You