Dr. Ong Visit June 26th

We met with Dr. Ong today and he was somewhat surprised that Joe was still losing weight.  He said it rarely happens, but he has seen it before.  He does think reversing the ileostomy will help.  Joe had lost 42 lbs and was continuing to lose.  It wasn't for lack of effort either.  Joe has been tracking everything in and everything out.  We went through my Weight Watchers Dining Out Guide and found the most fattening things we could and set out to get them for Joe.  The rest of us are eating lettuce and carrots!  The surgery will be scheduled the 3rd or 4th week of July.  They are contacting UMC and will let us know in the next few days.  Dr. Ong explained that this is another major surgery.  He repeated that statement 3 times.  He will have to open Joe up about 1/2 of where he opened him the last 2 times.  He has to stitch the 2 ends of the bowel back together and put everything back from there.  There is also the risk of a bowel or gas busting the stitch apart before it heals, which will cause Joe to go septic again.  For that reason, Joe will have to stay in the hospital for 1-2 weeks until Dr. Ong is sure he is out of the danger zone.  He told us it will take 3-4 weeks before Joe is doing much better and around 6 months to recover.  He doesn't know when Dr.S will start chemo.  It will really be up to Joe's body and how fast he can recover and how fast he can put some weight on.  So from here, everything is up in the air.  We just pray for a successful surgery and no bowel movements or gas.  How's that for an unusual prayer!  We are really challenging our prayer team now.   We did have a great week celebrating our 31st wedding anniversary, visiting with friends, going to a Diamondback game and celebrating our grandson's 3rd birthday.  Although Joe is fatigued, I am continuously amazed that he gets out there and tries.  He doesn't always make it through the events, but he always gives it a go, sleeps, eats and gets back up and goes at it again.  I really have faith that after this successful surgery and his weight starts coming back, he'll feel like a new person.  Right now he rests about 80% of a day, so we will use that as our baseline and head up from there.  Thanks as always for the continuous prayers, cards, and support.  Love to all,  Sherrie & Joe

Happy Father's Day!

We had a wonderful Father's Day surrounded by family. Although Joe is extremely fatigued, he just loves hanging out at home just watching the chaos with family (especially little Edison). Edison just keeps everyone in stitches. It was also Candace's 28th birthday, so we were able to celebrate her birthday too. Unfortunately, Joe's weight is taking a downturn. He lost another 3 pounds for a total of 40 pounds since his surgery. His bowels are just not working yet and the food and fluids pass right through. He is still fighting it and eats and drinks as much as he possible can endure. He will be going into the local doctor office tomorrow for IV's. He's just lost too much and they said he can't risk losing any more. We will also be meeting Dr. Ong in Tucson on June 26th to discuss Joe's next surgery. Thanks for all the cards and Father's Day wishes for Joe. Just put lots of smiles on his face! XOXO Sherrie

Good Dr. Day

Joe weighed in and has still not gained a pound. After that we met with Dr. Shivalband (Dr. S). He was up to speed on all that Joe had been through and was just amazed how well Joe is doing after all he has been through and after all the weight loss. The first thing he said was Joe does not need chemo for awhile. He stated that the hot chemo is extremely powerful and did a great job. Although there is definitely disease left, there is no panic to start chemo. He wants Joe's ileostomy reversed and weight back on Joe before he would even think of doing chemo. He said if he started chemo now, it would do way more damage to Joe than any good. He also said he will worry about the chemo treatment after Joe is much stronger, he has his reversal surgery and has put weight back on. This was music to our ears! Joe could not be happier. He's going to contact Dr. Ong and schedule the ileostomy reversal sometime in July. After Joe heals for several weeks, he'll talk about treatment. In the meantime, Joe will be monitored weekly and will be getting IV fluids occasionally due to his dehydration from the bowel setback. Dr. S was so upbeat and pleased with the surgery (despite the temporary setbacks). Joe and I left there just saying "finally, a good Dr. appointment and good news. Our exact quote was "those prayers are definitely working. We couldn't do it without our support group." THANK YOU, THANK YOU, THANK YOU!! Love to all, Sherrie & Joe

Not Many Changes

Just a quick update to let you know that Joe is doing OK. He hasn't lost any more weight, but unfortunately, has not gained any either. The bowels are still not absorbing much. Just to give you an example, Joe ate a scrambled egg and within a few minutes, the scrambled egg was sitting in his ileostomy bag. It just sailed right through. This happens a lot throughout the day. Joe's main job now is to eat, drink, take meds and record everything - in and out. He is extremely fatigued, but I think there are small signs of improvement. Like today, he made it through church and was able to sit and stand like everyone else. Last time he had to sit more and we had to leave early. He also made it for a short trip to the grocery store. It's the little signs of improvement that we have to stay focused on and he has to keep eating and drinking to stay hydrated and nourished the best he can. We see the oncologist (Dr. Shivalband) on Wednesday. We have no idea what that appointment will bring for Joe, but all we know is he can't handle the chemo treatment he was on before the surgery. Hopefully, we'll get better news and a plan that Joe can tolerate. I'll update the blog after our visit with Dr. S on Wednesday. Love to all, Sherrie

Dr. Ong Visit

Joe and I met with Dr. Ong and 4 other doctors today. It was a long discussion, so I'll try and just summarize. Basically Joe has been through so much (3 major surgeries, plus hot chemo) in less than 5 months. Every time he had a surgery, his bowels shut down. It is going to take 3-4 months to get them fully functioning again. Until then, Joe will struggle with fatigue, weight loss and hydration. He is right on the border, so he has to eat and drink more and will be constantly monitored. If it gets worse, he'll have to go back on IV's. The next part of the conversation was centered around the cancer that is still in Joe's abdomen. Dr. Ong wants him to start chemo as soon as he can, to prevent it from spreading. We have to set up an appointment with the oncologist immediately to discuss what type of chemo and when Joe will start the treatments. Joe and I were stunned. He's so weak and can't imagine how he could possibly handle chemo on top of everything else he is dealing with. The next part of the conversation was around his ileostomy and further surgeries. If all goes well, Joe will get an ileostomy reversal. Unfortunately, it's another major surgery that will require a week in the hospital, tubes everywhere, no food etc... Dr. Ong also stated that Joe could have Hot Chemo 2-3 more times, depending on how he's doing, his strength, his response to intravenous chemo. He may have more surgeries to remove more tumors down the road as well. Everything will just depend on how he recovers and how he reacts to the chemo treatments. Keep those prayers coming. Pray for mental strength, as well as physical strength. Today was a tough mental day, but Joe and I will put it behind us and move forward to continue the fight against this nasty disease. Thanks for all the prayers and never ending support. XOXO Sherrie & Joe

7 lbs 7 days

I wish I had better news to report, but Joe is still losing weight. The pound he gained came back off, plus one. He's losing a pound a day. The bowels have not started working yet. We will be heading back to Tucson on Tuesday to see Dr. Ong and try and get something adjusted to put some weight on Joe. I have to tell you that I am amazed at Joe. He is fighting this thing with everything he has. He refuses to lay around in bed, even though he is so weak and tired. He gets up early, takes his shower, gets dressed and forces himself to eat and start drinking. He naps throughout the day, but does it in the recliner instead of going back to bed. He is working on "normalcy", despite all the setbacks. He reads cards and emails throughout the day, although said he is having some problems with reading. His eyes may just be too tired to focus for very long. I'm doing everything I can to show Joe how to gain weight - - like eating cheese, sweets and pasta and gaining weight for him! Ughh!!! That demonstration has got to stop soon :) More to follow. Pray for a fattening weekend (for Joe that is!!) XOXO Sherrie