It Has Been a Busy Month

I’ve started this blog post at least 3 times. There seems to be so much to share that it’s overwhelming to me. I’ve decided that I’m going to post just the snippets – since I’m still very tired from everything. Unfortunately, I have not bounced back like I have in previous surgeries. This has been a rough recovery.

 

At first all went very well. On July 1^st I had the surgery. I got my bag, they cut out a bunch of tumor to send to various labs and the surgeon didn’t see any evidence of tumor growth when he went in to create the ileostomy. Unfortunately, I ended up with an ileostomy (I was hoping for a colostomy). When I spoke with the surgeon following the surgery, he said that he thought it would be a long shot to put on a colostomy bag. I had too much scar tissue in my stomach and they just couldn’t make it happen with all of that tissue.

 

Another unfortunate event was that my fistula was larger than they expected and ended up going into my bladder. Therefore, I woke up to find out that it’s a strong likelihood that I’ll be incontinent on the urine front for the rest of my life. They could fix it with another bag, but I’m just not willing to add yet another bag to my life at this time. This discovery was very hard for me to take and has made recovery harder for me.

 

I was able to leave the hospital on July 3^rd thinking that all was well. Unfortunately, on July 4^th, I was in excruciating pain and ended up going to UC Davis Med Center. They didn’t know what was wrong with me and tried various pain meds. After determining that it wasn’t anything serious, they sent me home (about 2 am). On July 5^th, all went well, but on July 6^th, I woke up in terrible pain in my back once again and so back we went to UC Davis Med Center. This time they decided to admit me to the hospital to see if they could do further work on me to determine the cause of my pain. 

 

After 2 days at the hospital, they still didn’t know what was wrong. They thought it was an infection that couldn’t be treated with oral antibiotics and they wanted to keep me at the hospital for 20 days to give me IV antibiotics. Fortunately, my Stanford doctor stepped in and spoke to UC Davis and convinced them to discharge me.

 

On Thursday, July 9, I went back down to Stanford to meet with my surgeon Dr. Shelton to see how things were going and to remove the staples in my stomach. I was having some kidney problems and so they ordered a Mag 3 test for me. On our way home, we got a call that the Mag 3 test was set for the following day – so we decided to stay down close to Stanford. This ended up being a good move, because at 4 am the following morning, I woke up in extreme pain once again and for the third time in a week, Pat and I headed to a hospital – but this time, it was Stanford.  There are many stories from my hospitalization but I was finally released after several days.

 

The next 3 weeks were tough. I’ve never had such a difficult time recovering from a surgery. I’ve lost a significant amount of weight due to multiple factors, including the fact that my new configuration doesn’t enable my body to absorb as many nutrients from the food that I eat. In addition, I did not know that it is not only not advisable, but actually dangerous to go “cold turkey” off of OxyContin. I felt like my pain was under control and so I just decided that Monday morning to stop taking any more Oxy. This was a very big mistake. I ended up becoming extremely depressed and tired and just wanted to sleep and cry. By Tuesday morning, my girlfriend Kirsten who was staying with me, was having trouble understanding me. Also – I knew that something didn’t feel right that morning, so I texted my oncologist’s nurse practitioner to tell her that something was off. When she called to talk to me, she was having so much trouble talking to me that she ended up talking to Kirsten. Needless to say, she instructed Kirsten to make sure that I started taking Oxy again (at a low dose) and told her that I needed to stay on Oxy until they could taper it down for me. Once the drug was reintroduced into my system, I began to feel much better. What a scary situation. Over the past 7 ½ years I’ve gone on and off of countless pain meds with no problem whatsoever. But – this was my first time on OxyContin. I’ve learned that this drug is unlike any other I’ve ever been on.

 

So – I am now tapering off of Oxy, my wounds are starting to heal and I am slowly getting used to my bag. I’m also starting to learn what it feels like when I think I need to urinate. Between that and using the bathroom very regularly, I have avoided the downsides of urinary incontinence.

 

Rather than continue to work on this post and continue to add to it day after day – I think I’m just going to stop there so that you’re up to speed with the latest.

 

But – I would be remiss if I didn’t end this post by being grateful for my amazing support network. I had a continuous parade of friends come to visit me at the hospital and at my home. I had so many people cook for me or bring me food. My sister and my mom both flew in to hold my hand and get me through some of my roughest days. And – most importantly, my dear husband Pat, who changes my wound every day and changes my bag every few days without complaint – only with love in his eyes. I don’t know how I got so lucky to have snagged this guy – but I feel like I won the lottery on the husband front.

A huge thank you to all of you who have been there for me, either in person, by phone, by email or just by sending me your prayers. I am so very very grateful. I feel like I am now really beginning to heal.