Once released from the hospital, I was discharged to the local area and stayed in the condo my wife rented so she could be close to me. We stayed there for 5 days and then I got the G-Tube removed from my stomach and was given the green light to fly home. Being back home was nice. Since returning home, Sharette, the dogs, and I walked nearly every day. I was also able to spend one day over at my friend’s house, where about 10 of us ate steak and lobster. I also was there for my son's 19th birthday where we had a Rubik's cube theme party. We had a nice fireworks show in our front driveway with my family on the 4th of July as well. Sharette's parents, and my sisters family joined us for 2 hours worth of fireworks and it was a fun night. I even got to take my niece and my great nephew, who flew in from CA, to do his first ever putt-putt game and Joey took him for his first every go kart ride. Then Joey left for a week to the Idaho Science and Aerospace Scholars Academy. We attended a closing ceremony event where we learned all the cool stuff he got to do like tour Micron, work with a team of 11 to figure out how to get to Mars and back, and then he flew to California to the NASA Ames Research Center.
I have been able to do some light yard work and continue to walk. I am hoping to get on a bicycle soon but that is still at least a few weeks away.
I didn't want to post and update until after my 6 week follow up appointment. So Monday the 18th of July, I went back to the airport with Sharette and headed back to San Diego as I worry and stress out about what's coming. The doctor couldn't remove a lot of the tumors attached to my bladder and he couldn't get to several places on my intestines, plus he didn't remove the tumors up on my diaphragm nor in a few other hard to reach areas. Also I've had some extra pains, plus chest discomfort, and my arms have had an unusual numb sensation from my shoulders and armpits down to my hands. I know I am messed up but what will the doctor say about the lump in my stomach and what he recommends for treatment, well here goes.
In regards to the lump, the doctor said it’s not intestine but something didn't line up when they put me back together so it's not symmetrical and as long as my bowels are functioning not to worry. The incision is supposed to be straight up and down but you can see in the picture that its not. You can also see in the pictures that my abdomen is not very attractive anymore. I used to rock six pack abs but those days are gone. My pain is still going to be managed with medications but with time and exercise, maybe I can reduce or get off them for a while. As for more chemotherapy, he said he didn't think it would do much good and that he recommends not doing it for now and may consider it later. He said that nothing is going to stop this cancer. My best option is to stay off chemotherapy because it didn't do much good before and it will only make me feel sicker. But there are two things that were recommended. First, go back on Celebrex to see if it reduces inflammation. Second, since my tumors were not effectively tested but I did have a complex blood DNA test to be in a trial study. The new DNA testing study took my blood and tested it. The testing ($5,800) is not covered by insurance but hopefully I don't have to pay it. The results are that I have an abnormal problem that a new experimental drug may be effective. The drug (Palbociclib) was approved by the FDA last year for metastatic breast cancer and has been shown to slow that particular cancer down but it is not approved for my cancer. The problem is that there will probably never be a large study for it on my type of cancer but the doctor is trying to see about possibly getting a doctor on the study to approve this drug for me to try to see if it may help slow things down for my tumor growth. I am hoping to get approved for trying the drug. It is a pill with far less side effects than chemotherapy and may actually have a better result for me if it matches up from what was shown in my DNA testing. There are still serious side effects with it but I want to at least give it a shot. My life isn't over but the reality of being told, nothing is going to stop my cancer does mess with my head. In my mind though I'm just not a cancer patient, I'm a husband, father, son, grandson, brother, uncle, cousin, and friend who just happens to have cancer. I'm going to enjoy my time as much as possible. I am almost always uncomfortable but when it turns to pain, I take pills. I am traveling a lot the next two months. Family vacation in August, 25th wedding anniversary vacation in September and then a trip back to San Diego for an MRI and doctors visit and press on to Arizona to attend Sharette's sister wedding and see family and friends. Then hopefully hear something positive from the scans and medication if I can get it.
Just a final thought. Tell those you care about that you love them and enjoy life over work. You never know how much time you will have. Four years ago, I thought I would live to be 80 or 90. I can tell you that when I am on my death bed, (hopefully a long time from now) you won't ever hear me say, "I regret that I didn't spend more time at work". I am grateful for every moment with my family and friends. I will post an update once I know if I am approved or denied for the trial drug. May God bless you all.