Painstakingly I’ve been asked to write our story. Painstaking for two reasons. 1) Re-hashing it and having to tell it hurts all over again and 2) We are not people who have ever want to burden others or even thought of ourselves as being on the receiving end of a crusade of pity or funding from our friends and family. We are proud and life is hard enough without having to burden others with our plight. Nevertheless, a dear friend of mine whose personality is as unique and special as her name (Alisa), insisted on helping us and wanted us to share our story:
Scott went for a run one day and when he got back, he informed me that he had peed a lot of blood. I immediately became concerned since I’m a nurse and in my experience peeing blood can often mean cancer. I asked him to see his PCP for a quick evaluation. A CT scan was ordered and a small 4 cm mass was detected in his bladder. He was sent to a urologist who confirmed by cystoscopy that Scott indeed had a very suspicious mass, and a surgery to remove the mass to be biopsied was scheduled immediately. The mass was removed and was found to be a muscle invasive bladder cancer. The mode of treatment was 4 cycles of chemotherapy and a radical cystectomy. That is, the removal of his badder, prostate and surrounding lymph nodes in the area. This was, to save his life.
After much interviewing of different surgeons, we felt the best surgeon to do the job was located in San Diego and the plan was to drive down there, young family in tow, at Christmas time and have this thing done. She would do the surgery but included creating a new bladder for Scott out of his small intestines.
Surgery was done on December 29th (a day before my birthday). It was an 8 hr surgery. I spent the day with my friend Alisa as she kept me distracted from the incredible worry I was feeling over the whole event. The surgeon was amazing in that she had her staff call me every 2 hours to let me know, how he was doing each step of the way. She told me prior to surgery that if cancer was found below the bladder, their would be a change in plans and Scott would not be receiving a new bladder on the inside but rather a ileostomy tube. After about 4 hrs, the call came that she would be creating a new bladder and that no further cancer was found. I actually breathed easier for the rest of the day and waited anxiously to hear how the surgery concluded as the days end approached.
The surgeon came out, told me Scott was recovering well. She then told me that at first, all had looked good. That is, until she began to explore further up Scott’s abdomen. She said as she went up, the lymph node tissue in his retroperitoneal area became abnormal looking. She sent sample sections to a quick pathology screening lab during surgery and they confirmed that indeed it appeared as if more cancer was discovered. Stage 4 metastasized cancer was a strong possibility.
As the surgeon told me this, I was reeling because, this wasn’t supposed to be the plan. How in God’s name was this happening? He is only 42 yeas old! It was surreal. The worst part, was that she specifically asked me not to disclose this information to Scott for at least a week of his hospitalization. She asked me to do this to deter him from becoming depressed and decrease his chances of a healthy recovery. This kind of information can dampen the psychological aspect of a patient’s recovery in ways that sabotage any chances of survival later on.
When he was back in his room recovering, I wanted to die. I wanted to hug him and say things to him that I just couldn’t without revealing the truth. In a way, I felt like I was betraying him too. I was also dealing with my own shock without being able to talk to him about it, my best friend. Needless to say, December 30th, 2014 was the worst birthday I’ve ever had as I tried to play it cool and assist him with everything.
When his surgeon finally did tell him the severity of his cancer, he cried. My husband is strong and he doesn’t cry ever, and yet this time he did. Words can not describe how bad I wanted to take his place or how my heart broke for him.
The cancer has affected 46 out of 52 lymph nodes and is bound to spread unless we can get a chemotherapy that will suppress and kill every single one of those damn cancer cells that are running around ramped in his body’s blood stream. So far there has been no spread or measurable disease to the rest of his body where the cancer can decide to land and grow. Yet, this is a fast growing cancer and we are doing everything possible to give Scott the best chance of surviving and preventing that from happening. He has a 10 percent chance of surviving this, but like our oncologist said. We should not focus on the 90 percent that don’t, but rather the 10 percent that do. Scott is young and that may give him a better fighting chance. We are fighting for our lives and have not stopped loving and raising our 4 year old son and 2 year old daughter who have no idea what is happening. They already love their daddy so very much. Their lives have been uprooted through this whole fiasco yet we are trying to stay strong and battle for Scott’s will to survive.
Every day we wake up realizing that this is now our reality and take a deep breath and try to preserver.
Your prayers and loving donations are so greatly appreciated at this difficulty time.
Thank you for taking the time to read our story.
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