Tag Archives for hope

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

Nerve (Almost) Block Effects

On Tuesday morning I had a nerve block. According to the pain specialist who performed it, the procedure couldn’t have been more perfect. The needle was easily passed through my tailbone to deliver the anesthetics to my nerves – this may be the one thing about my condition that has played out as described in a medical textbook. Because they inserted the needle into my tailbone, the area has been incredibly sore so the only way I’ve been able to sit is straight upright as if I have a plank in my back.

Ganglion impar block

Ganglion Impar Block

For the past 48 hours, I’ve been dutifully keeping a log of my pain improvement progress every two hours. Overall, I’m not pain free but I have less pain than before the procedure. I still have my right-side oriented pain in my lower abdomen, back and leg but I’m experiencing what I’ll characterize as a constant low level of pain on the pain scale. This probably means that combined with the nerve block, I’m feeling the benefits of my pain medications for the first time in a long time. My hope is to lower the level of pain medications I take over the next few months so when I have surgery the doctors will have room to treat me before reaching the maximum limits of pain medication doses during my recovery. The pain specialists have told me that my case is very complicated and the possibility exists that my pain will be difficult to treat post-surgery. This nerve block will be a good indicator of what they can expect.

I’m also hoping to go for a few walks before the effects of the nerve block wear off. Walking for a significant distance is something that I have a lot of difficulty with these days. With the weather being as wonderful as it is, it would be nice to pack a lunch, walk to the park, and sit in the sun for a while. That’s such a simple thing to wish for, but it’s something I badly want to do. However, I know I’ll have to take things slow because I just came back from an appointment and the car drive there and back has affected me negatively and increased my pain. I’ll dream about the walk to the park while I rest my body.

John Mellencamp – Hurts So Good