As you all know, I was in New Orleans this past week to meet up with my surgeon for the 6-week post surgical followup. We expected this to be an easy breezy meeting with the removal of my surgical drains, some short discussion of the next two months and a return home. Because of this, my wife did not join me on the trip and we gave my 15 year old son Riley the opportunity to take a trip to a new portion of the country for him.
Well, the visit with the Doctor on Tuesday showed that it was not going to be easy breezy but it should still be quite straight forward. The insertion of a stent between the bile duct and the small intestine would be done Wednesday afternoon as an endoscopy. Many endoscopies are done using twilight anesthesia rather than full anesthesia so we expected to get a cab ride to the hospital and then Riley would get a cab to take us back to the hotel after the procedure.
Since this procedure is a bit more complicated than 'normal' endoscopies, the doctor elected to go with full anesthesia. The anesthesiologist followed the proper protocol for carcinoid crisis, the same procedure used for my three days of surgery 7 weeks ago. For some reason, my body reacted and I immediately went into full carcinoid crisis as soon as anesthesia was given.
Fortunately, Dr. Boudreaux was in another OR and was able to come over and give me bolus injections of sandostatin over and over again until I came right out of crisis and they were able to continue with the procedure. Here is where the amazing doctor story starts.
Because of the crisis, I was not allowed to go home and needed to stay the night in the ICU. Dr. Boudreaux, knowing my son was with me and not my wife, offered Riley the chance to stay at his house for the night, offering to bring him back in the morning when he comes in for surgery or his wife could bring him in later. Riley thanked him but said he would stay at the hotel.
Dr. Boudreaux was not to be denied and found a room on the remodeled fifth floor of the hospital for Riley to stay in. Dr. Boudreaux then drove Riley to the hotel to get all of our stuff, check out of the hotel, and drove Riley back to the hospital to stay the night. I was completely unaware of any of this activity although Stephanie was in the loop the whole time.
This was an amazing act of consideration and compassion by a surgeon who did not have to do any of what he did. If you are considering treatment for your neuroendocrine tumors with the group of doctors in New Orleans, this is exactly what you can anticipate. Excellent care, knowledge, and compassion.
Saturday, July 28, 2012
Tuesday, July 24, 2012
Look ma, (almost) no tubes!
Almost there at least. Today I met with my surgeon, Dr. Boudreaux, in NOLA for my post surgical followup. I started the day with a cholangiogram and we reviewed that at our appointment. The cholangiogram revealed that there still is a bit of leakage from the bile duct which is not something desirable.
This means I need some sort of drainage somewhere to allow the bile duct to heal completely so that bile does not leak into my abdomen, leading to bad things. So, there are two options at this point. The first option is to leave in the external surgical drains. Losing these drains was my number one goal in coming to NOLA to see the surgeon so we are going to extend our stay by two more days and chose option number 2.
Option number 2 is to insert a stent through an endoscopic procedure. They will give me twilight sedation and then send a scope down my throat, past the stomach, and into the start of the small intestine, placing a stent from the small intestine to the bile duct. This will relieve the pressure on the bile duct, allowing everything to finish healing.
When we come back out in September for the full workup of my future, the doctors will again test to see if the bile duct leaks. If it does not leak, they will then remove the stent and I will be completely tube free.
Around the same time, I will get endoscopic ultra-sound imaging of the tumors around my rectum. This will give the doctor a feeling for how we could potentially attack those tumors and what sort of colostomy (none, temporary, or permanent) I will need.
We discussed other longer term options such as high dose MIBG scans or the PRRT treatment which work similarly, using radiation to burn the tumors from inside. SirSpheres could be performed in Denver which would kill many of the liver tumors, buying more time to treat the other tumors. A multi-viceral transplant is also still a possibility but it is not, currently, our first option.
So, not much change for now. My weight seems to have stabilized and my strength and endurance are returning. Hopefully, I will be returning to work and playing hockey soon!
This means I need some sort of drainage somewhere to allow the bile duct to heal completely so that bile does not leak into my abdomen, leading to bad things. So, there are two options at this point. The first option is to leave in the external surgical drains. Losing these drains was my number one goal in coming to NOLA to see the surgeon so we are going to extend our stay by two more days and chose option number 2.
Option number 2 is to insert a stent through an endoscopic procedure. They will give me twilight sedation and then send a scope down my throat, past the stomach, and into the start of the small intestine, placing a stent from the small intestine to the bile duct. This will relieve the pressure on the bile duct, allowing everything to finish healing.
When we come back out in September for the full workup of my future, the doctors will again test to see if the bile duct leaks. If it does not leak, they will then remove the stent and I will be completely tube free.
Around the same time, I will get endoscopic ultra-sound imaging of the tumors around my rectum. This will give the doctor a feeling for how we could potentially attack those tumors and what sort of colostomy (none, temporary, or permanent) I will need.
We discussed other longer term options such as high dose MIBG scans or the PRRT treatment which work similarly, using radiation to burn the tumors from inside. SirSpheres could be performed in Denver which would kill many of the liver tumors, buying more time to treat the other tumors. A multi-viceral transplant is also still a possibility but it is not, currently, our first option.
So, not much change for now. My weight seems to have stabilized and my strength and endurance are returning. Hopefully, I will be returning to work and playing hockey soon!
Thursday, July 5, 2012
Five weeks post surgery
It is hard to think that five short weeks ago, I was going in for my second day of surgery. I have been home for about three weeks now and, this week, I have finally felt like my recovery is moving forward significantly.
When I got back to Colorado Springs, I immediately went to my local oncologist to get my Sandostatin LAR shot and he weighed me in at 171 pounds. Four months previous, that same scale weighed me in at 203 which gives me a 15% weight loss in just four months. Two weeks later, that same scale marked me at 165 which is not a good sign.
I believe I have now turned the corner for two reasons. I am now tracking my calories and targeting at least 2600 calories a day which should yield approximately a 1 pound/week weight gain. Additionally, Dr. Young has prescribed me some appetite increasing medicine (not THC, gotta keep that security clearance) which I have been taking daily. I have noticed a real improvement in my overall energy and am hoping to get good news from the Doctor's scale at my followup next week.
My body has taken a few hits as well over the last two weeks which could also be part of the weight loss. One of my drains indicated an infection and I was running a low grade fever (100-101). Dr. Young started me on an antibiotic which seems to have solved that issue.
Then, the weekend of 6/23, we went to a local lake with some friends for some fun water skiing, tubing, and wakeboarding. Stephanie got up for the first time on skis and all our kids did well on skis or wakeboards.
On Friday of that weekend, the T-drain that goes into the bile duct stopped draining completely while the JP drain increased correspondingly in volume. Over the weekend, the JP drain started reducing in volume but was still excessive while the T-drain only increased a small amount. I called my surgeon and he suggested we get a cholangiogram the following week.
The cholangiogram (dye inserted through the t-drain) revealed that the bile duct was indeed draining into the intestine as desired but there was a large blob at one point that looked confusing and so we went for a CT scan. The CT revealed that the left lobe of my liver had absolutely no venous activity. This means there was no blood flow through the left lobe of my liver which means that the repair of the artery to that lobe almost certainly had failed.
So now, rather than having 80% of a liver, I am now down to about 60% of a liver. Hopefully, the right lobe will now start to increase in size to compensate for the loss of the left lobe. Tumors will certainly invade the new liver growth but I hope we will be able to stay ahead of it.
My surgeon also suggested conservative treatment of the necrotic liver for the time being. This means no new surgical drains or active removal of the liver. For me, that is good since it means I can avoid another trip to the operating room, at least for now. We certainly will re-evaluate again when I am in New Orleans but I hope things are looking good then for the removal of the surgical drains.
Return to work? Well, my happy path would have me return to work the Monday following my New Orleans trip which is 7/30. I don't know for sure if I will make it but if my improvement of the last week continues, I think I can. April 2nd was my last day at work and I know things have both changed and stayed the same but returning to that will help restore my feelings of normalcy for my recovery.
And sports? Well, I hope to go to some open skate sessions over the next few weeks to just get my feet underneath myself but won't try any skating with pads until I get the surgical drains removed. Bike riding has also been sidelined as I am not supposed to lift more than 20 pounds right now and I know I pull harder than that on some climbs (there are no flat rides in Colorado Springs). That will start again after the removal of my surgical drains.
My hopes to do the toughest century in the US also have to be pushed off till next year. Fortunately, the ride allows one to roll one's registration over to the next year for exceptional circumstances and have granted me an exception. August 2013 is when I will be making the ride.
So, overall, things are looking up right now for my recovery. There is still a ways to go but I am on track finally!
When I got back to Colorado Springs, I immediately went to my local oncologist to get my Sandostatin LAR shot and he weighed me in at 171 pounds. Four months previous, that same scale weighed me in at 203 which gives me a 15% weight loss in just four months. Two weeks later, that same scale marked me at 165 which is not a good sign.
I believe I have now turned the corner for two reasons. I am now tracking my calories and targeting at least 2600 calories a day which should yield approximately a 1 pound/week weight gain. Additionally, Dr. Young has prescribed me some appetite increasing medicine (not THC, gotta keep that security clearance) which I have been taking daily. I have noticed a real improvement in my overall energy and am hoping to get good news from the Doctor's scale at my followup next week.
My body has taken a few hits as well over the last two weeks which could also be part of the weight loss. One of my drains indicated an infection and I was running a low grade fever (100-101). Dr. Young started me on an antibiotic which seems to have solved that issue.
Then, the weekend of 6/23, we went to a local lake with some friends for some fun water skiing, tubing, and wakeboarding. Stephanie got up for the first time on skis and all our kids did well on skis or wakeboards.
On Friday of that weekend, the T-drain that goes into the bile duct stopped draining completely while the JP drain increased correspondingly in volume. Over the weekend, the JP drain started reducing in volume but was still excessive while the T-drain only increased a small amount. I called my surgeon and he suggested we get a cholangiogram the following week.
The cholangiogram (dye inserted through the t-drain) revealed that the bile duct was indeed draining into the intestine as desired but there was a large blob at one point that looked confusing and so we went for a CT scan. The CT revealed that the left lobe of my liver had absolutely no venous activity. This means there was no blood flow through the left lobe of my liver which means that the repair of the artery to that lobe almost certainly had failed.
So now, rather than having 80% of a liver, I am now down to about 60% of a liver. Hopefully, the right lobe will now start to increase in size to compensate for the loss of the left lobe. Tumors will certainly invade the new liver growth but I hope we will be able to stay ahead of it.
My surgeon also suggested conservative treatment of the necrotic liver for the time being. This means no new surgical drains or active removal of the liver. For me, that is good since it means I can avoid another trip to the operating room, at least for now. We certainly will re-evaluate again when I am in New Orleans but I hope things are looking good then for the removal of the surgical drains.
Return to work? Well, my happy path would have me return to work the Monday following my New Orleans trip which is 7/30. I don't know for sure if I will make it but if my improvement of the last week continues, I think I can. April 2nd was my last day at work and I know things have both changed and stayed the same but returning to that will help restore my feelings of normalcy for my recovery.
And sports? Well, I hope to go to some open skate sessions over the next few weeks to just get my feet underneath myself but won't try any skating with pads until I get the surgical drains removed. Bike riding has also been sidelined as I am not supposed to lift more than 20 pounds right now and I know I pull harder than that on some climbs (there are no flat rides in Colorado Springs). That will start again after the removal of my surgical drains.
My hopes to do the toughest century in the US also have to be pushed off till next year. Fortunately, the ride allows one to roll one's registration over to the next year for exceptional circumstances and have granted me an exception. August 2013 is when I will be making the ride.
So, overall, things are looking up right now for my recovery. There is still a ways to go but I am on track finally!
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