Just Around the Corner

by NotDownOrOut

If you are about to start or are in the middle of pelvic radiation therapy, do not read this blog posting.  Trust me when I say that my experience with the treatment was uncommon and unpleasant and you would do better to focus on positive thoughts. Moreover, my experience has a happy ending so there is no need for you to entertain any negative thoughts.

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I do not want to jinx the situation, but I may have reached a breakthrough in my recovery from adjuvant radiation therapy following my diagnosis with uterine cancer and hysterectomy. This week I have gone hours at a time without any significant pain due to radiation cystitis. It is 11 p.m. on Thursday evening, and I have not had any pain today that I would rate higher than a 4 on a scale of 10 with 1 being minor pain and 10 being enough pain to make me cry out loudly. This is the single best day that I have had since mid-December of 2011.

My chief physical complaint after six weeks of chemotherapy and five weeks of radiation was radiation cystitis. I bled from the bladder for some time during, and for a couple of months after, this treatment. In December of 2011 I was hospitalized for a week only a few days after this bleeding started. At that time the pain was so terrible that I sobbed every time I passed urine.

As blood clots started forming in my bladder I became incapable of passing urine at all. The blood clots pictured below are small ones. Matters got much worse. I had to struggle to eject the clots through a burnt urethra while tears ran down my cheeks. A day or two after I took the photograph below I had to have a catheter put in place to help me pass the blood. I received repeated injections of heparin in my stomach to help break up the clots and make them easier to pass. A bladder infection made an already painful condition even more excruciating. I had to stop radiation therapy treatment. My physician had planned for me to undergo internal radiation (brachytherapy) for a week after my five weeks of external radiation therapy, but decided I might lose a previously healthy bladder if I had that treatment.

When I got out of the hospital I was a mess. My bladder did not stop bleeding and it was some time before I stopped passing clots. I have never given birth, but it felt like every trip to the bathroom was “labor.”

But for the fact that my sister Kathy came out to take care of me, I probably would have gone home and stayed there for a month. With Kathy’s help I returned to work and functioned. She drove me to work every day and worked by computer while I taught classes. She slept on the couch in the next room or sometimes at the other end of a sectional sofa so that she could help me get up when my bladder was so inflamed that I went to the bathroom every ten minutes. She kept my water glass filled twenty-four hours a day. She did the grocery shopping and cooked our meals. When the pain passed beyond 10 and nothing eased it, she stroked my hair and prayed with me for the strength to keep going until the pain would pass. I cannot tell you how scared I was. I only know that my sister was there for me every minute of the day.

At the end of January of 2012 a urologist looked inside my bladder with a camera and found the contents murky with stalactites of injured flesh all over the lining of the bladder. I felt tortured. I started taking Oxybutynin to address the constant urge to urinate. Even after I started taking that medication the pain continued. I used to track it in a diary and the pain was consistently in the 5 to 10 or higher range. I had one 8 hour stretch in the entire year of 2012 without pain.

This year I decided to stop recording frequency and pain levels. I think this change in my behavior was good for me. I stopped living from hour to hour and stopped thinking about the fact that little changed no matter how much time passed. Earlier this month I had a second block of time without noteworthy pain. Ever since then there has been some improvement. I am starting to think I have turned a corner.

I might get better after all. And that prospect is so wonderful that I have been afraid to admit just how much I long for it. But tonight I will send a copy of this posting to my sister and several of the friends who saw me through this trial (minus the gross photograph), so that they will know that, thanks to them, I see a path before me that is much easier to walk. I could not be more grateful to my family and friends for their support. Their strength and the strength I felt because of my faith and theirs has seen me through.

If you have also experienced radiation cystitis and are wondering whether it will ever get better, well I believe it can! Feel free to skip the graphic and gross photograph that follows if you are squeamish.

 

 

 

 

 

 

 

 

 

 

 

 

 

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