April 24

Just a quick post to let everyone know that Brian is home now! He'll be on a feeding tube for a few more weeks to supplement his food intake. He is still very fatigued, but overall he is doing well and very glad to be back home.

April 22nd: A Turning Point

This will be a short but sweet post. Today has been the best day so far! Brian got both chest tubes out and the doctors feel that he is still on track to get home this weekend. His WBC is starting to decrease, his spirits are up, and his system is handling the food pretty well. He is finally starting to sound like himself again. Hopefully, the next time you tune in he will be at home.

Great news to share...Brian gets to eat REAL food for the first time tonight! He is breathing better and the doctors and surgeons are pleased with his progress. In fact, they think he will be able to come home on Friday. Between now and then they will be watching the drainage from his chest tube to make sure it tapers off. They do not want to send him home with those tubes still attached. The surgeon feels that even if Brian's WBC continues to be high, he will still get to come home because his team has addressed all of the issues they felt were potentially threatening to Brian's recovery. The surgeon told us, "We treat the patient not just the numbers."

April 19th

Brian's surgery went very well today. The thorasic surgeons were able to remove the infection without cutting into his lungs, which will reduce his recovery time. Two incisions were made and the surgeons used a combination of cameras and instruments to scrap the infection off of his left lung. As the surgeon put it, it was essentially like peeling the skin off of an orange. We anticipated that the surgery could take up to four hours but the procedure was complete in just a little under two hours, a huge relief for us! Two chest tubes were inserted in the back side of his left lung to continue draining any additional fluid, but if all goes well these should come out in a few days. They will be keeping him in ICU for a day or two for observation. When I left him tonight he was resting comfortably and breathing easier. Hopefully over the next few days, his WBC will decrease significantly and we can begin talking about getting him home!

April 16th

After several days of having a high white blood cell count (WBC), the doctors decided to do more testing to get to the root of the problem. As I mentioned in a previous post, the collection of fluid in Brian's abdomen is normal, but there is a chance that the fluid can become infected. Further testing revealed a bacteria in the fluid and proper antibiotics are being administered. Unfortunately, the medication has not been enough to bring his WBC down to a normal level. Another Upper GI was ordered to determine if there were any leaks in his digestive system, and a CT scan was ordered to inspect the rest of his chest abdomen and pelvis to look for additional, secondary infections. Results of the upper GI showed no leaks and the CT did not reveal other abscesses or infection in his pelvis or abdomen. However, the tests did reveal that infection has collected around his left lung. He has had a chest tube in his lung for several days to drain the fluid, but the fluid has become semi-solid and is not draining through the tube. The doctors also decided that the circumference of the catheter in his abdomen was not big enough to drain all of the infected fluid out, so it has been replaced with a larger drain. Immediately after inserting the new catheter, the fluid was draining in greater volumes, which is a good sign. As for the infection that has collected around his lungs, another surgery will be required to remove it. The doctors hope to make a small incision and use cameras to navigate around and remove the pockets of infection. While they are working to minimize the invasiveness of this surgery, they will not know how invasive it will be until they are able to have a look inside his left chest cavity. The surgery is tentatively scheduled for Saturday, and the doctors anticipate that this will extend his hospital stay by four or five days. On a more uplifting note, because there were no leaks revealed, the doctors are letting him drink clear liquids again. I've never seen a person more happy to get a Sprite.

While the prospect of another surgery is troubling, it is also a bit of a relief to have what we hope will be the answer to the question of his high WBC. I hope this will be the turning point in his recovery. Finally, while Brian is keeping a stiff upper lip he is mentally and physically exhausted. We love you all and there are no words to express our gratitude and appreciation for the kindness and support you have showed us during this struggle, but for now I ask that we hold off on any visiting until these complications are resolved. In the meantime, I will do my best to keep this blog as up-to-date as possible so that you are all in the loop.

April 14th

The past few days have been rough. After a really good day of feeling stronger, early Saturday evening Brian began experiencing sharp pains in the upper left side of his back and chest. X-rays revealed that his left lung was partially collapsed. The fact that he has had several organs removed causes the body to react by filling the empty spaces with fluid. The doctors have suggested that the lungs are reacting "sympathetically" to the fluid build up in his abdomen. Along with the body's natural response to the chaos it has been through, the thorancentesis introduced air into the area around his left lung, which may have also been pricked during the procedure. The pressure from the fluid and the air caused a partial collapse of lung. To combat the problem, they inserted a tube in his chest to release the pressure of the air and fluid, allowing his lung to re-expand. The tube will be left in until he has several days with no drainage of fluid. The procedure was very painful and he continues to feel quite a bit of pressure pain, but they are managing it with medication.

Sunday was a great day! I spoke to the surgeon who confidently assured me that the complications Brian is experiencing are normal and in line with what he anticipated for Brian's recovery. He even decided to start Brian on a limited amount of fluids by mouth. Unfortunately, Brian had a rough Sunday night. Between the pressure pain from the chest tube and the constant interruptions of doctors and nurses, he did not get much rest. The next morning, his white blood cell count had increased again. A CT scan was ordered and dye was injected into the drain in his abdomen to determine if the drain was properly placed and to determine exactly where fluid was coming from. The results revealed that the placement of the drain was fine, and as the doctors suspected fluid was collecting in the spaces where his organs used to be. They will also be analyzing the fluid to determine whether or not any bacteria is growing in the fluid.

Monday night was much better and Brian got plenty of rest through the night and into the morning. He has been up walking. In fact, today he took about a thirty minute walk. The doctors are working to get him home by the end of the week, but they are waiting to see a consistent decline in his white blood cell count.

Amidst the complications, I see excellent signs of progress. Brian's system is handling the feedings from his G-tube very well. In fact they have increased the feeding to his goal amount which was 50 cc's per hour. He is getting stronger and more mobile. If this trend continues we hope to have him home by the weekend.

Once again, thank you all for your love and support.

Friday, April 10th

Friday, April 10th

Dear friends and family, I'm sorry that I have been out of touch but it has been a rough couple of days, however I think we are back on track! After several days of tests revealing increasingly high white blood cell counts, Brian's doctors decided to run some tests to rule out infection and other complications. First they did blood cultures to determine whether or not he had an infection. This test involves swabbing a petri dish with some of his blood and then waiting to see if any bacterial organisms grow, thankfully there were none, but his white cell count continued to rise. The doctors decided to do further testing because while his white blood cell count was rising, he showed no other symptoms of infection (fever, increased heart rate). They were also concerned about leaks that may be present in the areas where the surgeons refused his bowels and stomach back together. The first test he had was an upper GI which did not reveal any leaks, the second test ordered was a CT scan of his abdomen, which revealed fluid build up in the left side of his abdomen. They inserted a draining tube to keep the area free of any additional fluid build up. Testing of the fluid revealed that it was coming from the pancreas, but the surgeons advised us that that this was common (as you recall, part of his pancreas was removed and it is still healing). In addition to the fluid in the abdomen, fluid was also starting to build up around his lung and the doctors felt it necessary to do another thoracentisis.

Once the fluids were drained, the doctors decided to start Brian on his G-tube (a feeding tube leading directly to his stomach). They also replaced his morphine pain button with a new pain medication called Roxicet (a combination of oxycodone and tylenol). The morning after they began the feeding tube, his white blood cell count finally started to decline. Unfortunately, he is still not able to drink any fluids.

While these complications have been worrisome, the doctors assure us that they very common. They are keeping a very watchful eye on Brian to ensure an optimal recovery. As of today, assuming this latest trend of progress continues, the doctors are predicting that he will be able to come home Monday or Tuesday with the assistance of home healthcare professionals.

Mondday, April 6th
Just returned from my afternoon visit with Brian and I continue to be amazed and encouraged by his progress. His NG tube (tube pumping fluids out of his stomach) was removed. It actually came out in his sleep last night, but docs say as long as he does not feel nauseous or sick, they will leave it out (it's just like Brian to find a way to take matters into his own hands to speed up progress). It was nice to see his face without any tubes attached. They gave him a blood transfusion while I was there today because his hemoglobin levels were down, but the nurses told me that was normal after major surgeries. Docs continue to manage his pain and he seems more comfortable. We are hoping that tomorrow they will start feeding him from the feeding tube that is going directly into his stomach. Keep thinking positive thoughts!

April 5th

April 5th

Today Brian was moved to a regular room and he began receiving intravenous nutrition (glucose, lipids, etc.). They also removed his catheter. He is still very fatigued, but is able to move around a bit. So far all is going very well. Not much else to report for today.

On the Road to Recovery

Now that we are out of the weeds, I’m doing my best to fill in for Brian and share what I can when I have a moment of “sanity.” First things first, Brian is on the road to recovery and that is our focus, but I do want to give our dear friends and loved ones an update. For any of you who may feel left out of the loop, I extend my apologies. This has been overwhelming for us and we (mostly me) are still learning how to communicate our challenges with those who love and care about us. It’s hard, the more you talk about it, the more it becomes real, and the more it becomes real, the more it becomes something that seems too big to manage, so since we arrived at University Hospital on April 1^st, I’ve just been focusing on getting through the obstacles that each day presents. Please know that we love you all, and there is truly no way to thank you for the tremendous love and support you have shown us throughout this ordeal. Through your prayers, positive energy and good wishes you are all playing a critical role in Brian’s recovery.

April 1^st Day One: The Mother of All Surgeries: This ain’t no April Fools Joke.

Brian’s surgery began at 12:00 noon. The plan was to remove all tumors, and then give Brian a heated chemotherapy treatment in his abdomen, a procedure called HIPEC . We anticipated that the surgery could take as long as 8 to 10 hours, possibly even longer but at quarter till 3:00, the nurses from the operating room came out to tell us that they were starting the chemotherapy treatment, the final stage of the procedure. Somewhere between 5:00 and 5:30, the surgeon came out to speak with our families about the outcome. He told us that Brian’s Appendix, Gall Bladder, Spleen, a small portion of the pancreas, a portion of his stomach, some of his diaphragm, the omentum (abdominal fat pad),and a portion of his colon had to be removed in order to get all of the tumors out of Brian’s abdomen. The surgeon had prepared us for this, but it was still very frightening to learn that so many organs had to be taken out. He informed us, and you all may know, that the appendix, gall bladder, omentum and spleen are not essential, and even though portions of the stomach and colon were removed, the surgeon expressed confidence that Brian would be able to return to a “normal” quality of life once he fully recovered. In the interim, Brian will not be able to eat or drink for 7 days and he will be on a temporary feeding tube until the internal stitches heal.

We all had many questions about Brian’s short and long-term recovery. Will he be able to eat normally (yes, but not big meals)? Will he need more chemotherapy? (possibly, but they won’t know until further testing is done once Brian is recovered), When do you estimate this started (probably around 2007)? On a scale of 1 to 10 with 10 being the worst, how does Brian’s case compare to others you have seen? (4 or 5) How long will he be in the hospital (at least a week)? Of course we also had questions about the cancer returning down the road, but the surgeon felt it was premature to discuss long-term concerns. He emphasized the importance of focusing on Brian’s recovery from the surgery, as it is one of the most difficult surgeries a body can go through. After his recovery we will begin talking about expectations for the future. He encouraged us to call anytime with our questions or concerns.

Brian spent about two hours in the recovery room, and around 7:00 I was able to see him. He was still very groggy from the anesthesia, but not too groggy to ask me to tell the nurses to “stop with the Robert shit,” (for those of you who don’t know, Brian’s first name is Robert, Brian is his middle name). I was encouraged, he clearly had not lost his feisty spirit. At 8:30 they took him to ICU. He was stable and doing very well, but the nurses and surgeons wanted him in an area where he could be closely watched. He wrestled with intense pain (and thirst) through the night. The pain they were able to help manage, the only relief for his thirst though were moistened swabs. I stayed all night and as the morning approached Brian was resting more peacefully.

April 2^nd Day Two

When I returned the next day around 3:15 p.m., Brian looked great and was in good spirits. His color had returned, and most of the post-surgery swelling had gone down. His incision looked clean and healthy. He was nodding off a lot, but in between nodding off and waking up he was talking and making jokes. It was a dramatic improvement for the first day after major surgery. Later that night the nurse had him up and sitting in the chair for about an hour. Overall, a good day and great first step toward recovery.

April 3^rd Day Three

When I arrived at the hospital, the dressings for Brian’s incision had been removed so that it could begin to heal. He was still in relatively good spirits, but was in a bit more pain than the day before. He had a rough night because the nose tube for his oxygen came loose in the night, and he struggled a bit to get deep breaths. The next morning when they took his chest X-ray (they do this every day to monitor his respiratory health), fluid had built up around his left lung. The doctors and nurses assured us that this is a very common occurrence post surgery because the cells in the body are working overtime to heal the body which sometimes results in excess fluid. Brian was taken to radiology for a thoracentesis (draining the fluid from around the lung). Once the fluid is drained, the lung begins to expand, which is unfortunately a very painful process.

After such a dramatic improvement the previous day, it was hard for Brian (and us) not to experience the same dramatic improvement on the second day. But, the doctors, nurses, and his surgeon, reminded all of us that his body has been through a lot and that some days may be better than others. It doesn’t mean that he is not progressing well in his recovery. In fact, they assured us that he was doing very well. Moving forward, the nurses advised Brian that he needed to make sure he was using his “pain button” every six minutes to help keep him as comfortable as possible. When I returned to the hospital later that night, Brian seemed much more rested and in better spirits.

April 4^th Day Four

Brian is doing GREAT today. His breathing has improved dramatically and so far the fluid is not building back up around his lungs. For the past several days his heart rate had been running a little high and he was receiving medication to help lower it. Today his heart rate has slowed back to a more normal level even without the medication. He looks a lot stronger and a lot more relaxed. He told me he slept for 12 hours last night. They have taken off the lower leg cuffs that help with circulation (at least during the day) and they are starting to wean him off of his oxygen. They are even talking about getting him up to walk to day. Everything considered, today has been filled with significant signs of progress. I'll be going back tonight and will report more if anything changes. Keep sending us your positive thoughts and energy, it’s definitely working.

The countdown to surgery

On Wednesday, March 11, thanks to our UofL connections and friends, I was accepted as a patient of Dr. Donald Miller, Director of the Brown Cancer Center on the UofL Health Sciences Campus. I personally know two cancer survivors who were treated by Dr Miller. They have only good things to say about him, as does everyone else who has met or been treated by the man. Read about him here: Dr. Donald Miller.

Upon meeting him for my first visit (March 17), I immediately felt comforted. After all the travails that led me to this point, I finally felt safe. I know I'm in good hands.

He ordered a biopsy under (another) CT scan to be drawn from my big tumor in the center of my abdomen. He wanted to confirm the diagnosis -- in fact, after hearing of my adventures with the gastro and others, he said "you don't have a diagnosis yet." I did the CT biopsy without incident on March 19. Worst part was the wait AFTER the biopsy procedure: they were concerned about bleeding, and I had to wait for 4 hours in a recovery room. Thankfully, the NCAA tournament started that day and I was able to watch basketball and chat with the staff for distraction.

March 20 I had a PET scan: Sat for 90 minutes while an IV-injected radioactive sugar circulated throughout my body, then I just lay in the tube for 30 minutes. Simple and easy. And expensive! I'm getting high dollar treatment.

Follow-up visit with Dr. Miller on March 21 was about 10 minutes long:

• biopsy confirms the diagnosis

• my case has been quite a topic of conversation at the Cancer Center all week

• I need to see a surgeon, and get surgery scheduled.

• Just prior to my visit, Dr. Miller had called a surgeon that he said he "would send my own son to"

• He had already scheduled me to see the surgeon at noon THAT day. Good man. Powerful man.

So, I met the surgeon that day. Got some facts on what to expect (see the sidebar for surgery and recovery estimates), and began the process of preparing. What a ride it's been.