Today I went skiing with my kids and our friend, Sean. It was a beautiful sunny, albeit icy, day at Crystal Mountain. It felt great to be outside, laugh and have some fun!
Jon's ascites is slowly improving, he now only looks 5 month pregnant and his feet and legs are much better. He is still fatigued and has some abdominal pain but overall much better then a week ago. He has all his buddies over tonight to watch UFC, I guess that is the next best thing to hunting so he is a happy boy. Somebody needs to come up with a February hunting project that is accessible for him!!
Lori B, you are hilarious :)
Saturday, January 31, 2009
Thursday, January 29, 2009
Today we met with Dr. Lin who is an oncologist at the Seattle Cancer Care Alliance (UW and Fred Hutchinson combined). We were referred to him by the oncologists that treated Jon while he was in the UW Hospital. It was an interesting visit and we both liked him. He reviewed all of Jon's scans, histories and notes from SCTWC. He feels strongly that Jon's current condition is a result of liver damage from all of the chemo rather than a complication from the cancer itself. That has been the big question all month and our decision making process has been trying to decide to treat the cancer more aggressively or give Jon some time off to heal. When Dr. Linn looked at his scans he concluded that the cancer has only spread minimally, Jon's liver has shrunk significantly in size, and that he best results obtained from chemo have been with the platinum based therapies like oxaliplatin, 5FU and cisplatin. As a result he feels that Jon should take time off to heal his liver, esophageal varices, and ascites, have a new scan then return to chemotherapy. Y90 is off the table for now as it would cause significant more damage to his liver.
When Jon was first diagnoses and really throughout his whole treatment there has been a question as to whether or not the original source of his cancer was his pancreas or some other GI organ. The original biopsy was inconclusive and Dr. Chue and the other oncologists deduced pancreatic from the pattern of cancer, type of cell, and Jon's history. After Dr. Linn reviewed the 2 1/2 years of records, scans, and results from chemo he is hypothesizing that it may actually be a cholangiocarcinoma (primary in the ducts of the liver) rather than the pancreas. It sounds strange and even upsetting that there would be this type of question, however the treatment for both types are essentially the same and Dr. Chue has also considered this possibility over the course of Jon's treatment. What's somewhat encouraging is that there is a protocol utilizing some platinum based chemotherapies that has produced long term survival in cholangiocarcinoma patients. Also Photo Dynamic Therapy has already been used on primary liver cancers and may be a more viable option should this hypothesis prove correct.
Dr. Lin called and spoke to Dr. Chen while we were still in his office and they concurred that Jon should stop the POLF for now and get scheduled for his next scan. He will be seeing our naturopath, acupuncturist, and nutritionist to focus on healing his liver over the next month. The ascities is somewhat better and he has not had any additional bleeding. Dr. Linn also gave Jon a prescription to reduce the portal hypertension (the back up in the liver that is causing his ascites and varices) and we are hopeful that it will have a positive affect.
Dr. Chue finally called me back last night. He had been in San Fransisco getting a second opinion on his eyes. I am relieved he is still in touch and will get back to him in the next few days to discuss Dr. Lin and Chen's opinions.
When Jon was first diagnoses and really throughout his whole treatment there has been a question as to whether or not the original source of his cancer was his pancreas or some other GI organ. The original biopsy was inconclusive and Dr. Chue and the other oncologists deduced pancreatic from the pattern of cancer, type of cell, and Jon's history. After Dr. Linn reviewed the 2 1/2 years of records, scans, and results from chemo he is hypothesizing that it may actually be a cholangiocarcinoma (primary in the ducts of the liver) rather than the pancreas. It sounds strange and even upsetting that there would be this type of question, however the treatment for both types are essentially the same and Dr. Chue has also considered this possibility over the course of Jon's treatment. What's somewhat encouraging is that there is a protocol utilizing some platinum based chemotherapies that has produced long term survival in cholangiocarcinoma patients. Also Photo Dynamic Therapy has already been used on primary liver cancers and may be a more viable option should this hypothesis prove correct.
Dr. Lin called and spoke to Dr. Chen while we were still in his office and they concurred that Jon should stop the POLF for now and get scheduled for his next scan. He will be seeing our naturopath, acupuncturist, and nutritionist to focus on healing his liver over the next month. The ascities is somewhat better and he has not had any additional bleeding. Dr. Linn also gave Jon a prescription to reduce the portal hypertension (the back up in the liver that is causing his ascites and varices) and we are hopeful that it will have a positive affect.
Dr. Chue finally called me back last night. He had been in San Fransisco getting a second opinion on his eyes. I am relieved he is still in touch and will get back to him in the next few days to discuss Dr. Lin and Chen's opinions.
Tuesday, January 27, 2009
We are back at chemo today and Jon seems to be tolerating it fairly well. We had a long meeting with Dr. Chen and decided that it is time for a new scan before he, Dr. Goswami, and Dr Linn make a decision about Jon's treatment. We will continue on this course until those are all completed. The fluid is a little better with the drain and diuretics but Jon has been exhausted. I think he might have used up all his energy with our visitors this weekend but it made him almost as happy as duck hunting! Duck season is now officially over so he's going to need to find another source of entertainment when he starts getting a little more energy.
I am currently typing from my phone as my computer is in the shop. Be patient with me if my emails are short and slow until its return next week.
We see Dr. Linn on Thursday and Dr. Goswami on Friday. I anticipate the scan next week so it may be another week or so until we have a definitive plan.
I am currently typing from my phone as my computer is in the shop. Be patient with me if my emails are short and slow until its return next week.
We see Dr. Linn on Thursday and Dr. Goswami on Friday. I anticipate the scan next week so it may be another week or so until we have a definitive plan.
Sunday, January 25, 2009
We just wrapped up an enjoyable weekend with our friends Ray. Leonie, and their daughter Ebony. After dropping them off at the airport Jon has decided it is now time to drain all of this fluid. We are back at the UW waiting in the ER. Hopefully they will admit him today, drain the fluid, install the shunt then send hom home in time to have chemo on Tuesday. Jon really perked up upon the arrival of our Australian friends and actually had a great weekend. He feels pretty good other then lugging around this extra 35 lbs of fluid.
Friday, January 23, 2009
Thursday, January 22, 2009
Jon is still swollen up like a beach ball, not only his abdomen but his legs and feet. His energy level and attitude are slightly improved but he still can't do much. We've been trying all kinds of natural remedies for ascites to no avail. I offered Pamprin but he turned it down :). In all seriousness, we have a call into Dr. Chen regarding diuretics but don't want to use them without a medical OK since they can lower his blood pressure. We are also awaiting a call back from Dr. Goswami regarding the shunt and the Y90. I hate waiting....
Jon is more chatty these days and is actually answering his telephone most of the time so feel free to call him. I am working at home today so at least he has company while he lays on the couch.
Jon is more chatty these days and is actually answering his telephone most of the time so feel free to call him. I am working at home today so at least he has company while he lays on the couch.
Tuesday, January 20, 2009
Although Jon is home from the hospital he continues to feel crummy. He is weak, tired and his stomach, legs and feet remain extremely swollen. Cindy took him to see one of our "Witch Doctors", Dr. Meeker, this morning and I took him for acupuncture this afternoon. He did perk up after all that and managed to eat a little bit. His stomach is so huge that he can barely get any food in there but at least he's not bleeding anymore. He is napping right now before dinner.
I've been on the telephone all day scheduling his follow up appointments. He is scheduled for chemotherapy next Tuesday but we are hoping to cancel it in lieu of the Y90 mapping and follow-up procedure. I spoke to Dr. Goswami's assistant who wanted to schedule an appointment for Jon to see Dr. G but I told him we don't need an appointment, we need the procedure. Dr. Reilly also called today and told me there is a shunt/stent procedure where they could potentially drain the fluid in Jon's abdomen and direct it back into his bloodstream. I spoke to Dr. Goswami's assistant about that and he said Dr. G. can make the appropriate referral. Jon would like to try to rid himself of the ascites without any invasive procedures but we haven't had much luck thus far. I also scheduled him to see Dr. Linn at UW for a consultation on the 29th. Jon did get some significant relief from acupuncture today so we scheduled another one for Friday morning. Photodymanic Therapy is on the backburner because it is untested on pancreatic cancer and would be a long road to get the procedure performed or approved. It is difficult to keep all these balls in the air at the same time so that Jon may get what he needs when he needs it.
On a positive note, Kelsey and I were up at 5 am to drive to Seattle to watch President Obama's Inauguration with the Seattle crowd on the big screen at the Paramount Theater. It was an inspiring morning and I am thrilled that my son has such an interest in our country. When Aretha Franklin started to sing My Country Tis of Thee Kelsey stood up alone in the crowd and put his hand over his heart...the rest of the crowd then joined him. It's nice to feel hope and optimism wherever we can find it.
I've been on the telephone all day scheduling his follow up appointments. He is scheduled for chemotherapy next Tuesday but we are hoping to cancel it in lieu of the Y90 mapping and follow-up procedure. I spoke to Dr. Goswami's assistant who wanted to schedule an appointment for Jon to see Dr. G but I told him we don't need an appointment, we need the procedure. Dr. Reilly also called today and told me there is a shunt/stent procedure where they could potentially drain the fluid in Jon's abdomen and direct it back into his bloodstream. I spoke to Dr. Goswami's assistant about that and he said Dr. G. can make the appropriate referral. Jon would like to try to rid himself of the ascites without any invasive procedures but we haven't had much luck thus far. I also scheduled him to see Dr. Linn at UW for a consultation on the 29th. Jon did get some significant relief from acupuncture today so we scheduled another one for Friday morning. Photodymanic Therapy is on the backburner because it is untested on pancreatic cancer and would be a long road to get the procedure performed or approved. It is difficult to keep all these balls in the air at the same time so that Jon may get what he needs when he needs it.
On a positive note, Kelsey and I were up at 5 am to drive to Seattle to watch President Obama's Inauguration with the Seattle crowd on the big screen at the Paramount Theater. It was an inspiring morning and I am thrilled that my son has such an interest in our country. When Aretha Franklin started to sing My Country Tis of Thee Kelsey stood up alone in the crowd and put his hand over his heart...the rest of the crowd then joined him. It's nice to feel hope and optimism wherever we can find it.
Monday, January 19, 2009
Sunday, January 18, 2009
Thank You!
Jon had a decent day today. They have him off all of his IVs and onto oral pain meds. He's eating fairly well, sitting up and fairly talkative. I spent last night with him, Dan spent the morning and most of the day, Kristi has tonight and tomorrow. I am hoping to bring him home after work and if they let him go earlier Kristi will be in charge. Yesterday he said he wasn't sure he was well enough to go home but tonight he says he's feeling ready. He's craving Chex mix with mixed nuts?!
Thank you to everyone for all of your help these last two weeks; our families, our friends, my staff and coworkers. Thank you for the food, the prayers, phone calls, text messages, emails, checking in on Kelsey, and general moral support. Thank you for taking care of our businesses and my patients so we could focus all of our energy on getting Jon well. We still have a long road ahead of us, but for now, it looks like we've won this battle.
Thank you to everyone for all of your help these last two weeks; our families, our friends, my staff and coworkers. Thank you for the food, the prayers, phone calls, text messages, emails, checking in on Kelsey, and general moral support. Thank you for taking care of our businesses and my patients so we could focus all of our energy on getting Jon well. We still have a long road ahead of us, but for now, it looks like we've won this battle.
Saturday, January 17, 2009
Jon is feeling quite a bit better today. He's sitting up, talking, umedicated and actually says he's starting to feel human again. His hematocrit is up to 30 (6 more point til normal) and he has not received any more blood. We just met with the weekend Team (only 2 doctors today), they are moving him out of ICU today and expecting him to go home on Monday. We are going to schedule an appointment with oncologist, Dr. Linn here at SCC. Although we have been historically very happy with SCTWC they cannot offer surgical or radiological interventions. We are considering the best of both and want to make sure we have all the information we can get available to us for the next step.
I have been reading Jon excerpts from Barack Obama's "Audacity of Hope" last night. The must have given him some Democratic blood because he actually seems to enjoy it :)
Jon has a big day ahead with lots of family visitors, including Wyatt and Maelie which is always his highlight! I would ask anyone else to wait until later this evening or tomorrow to come by. I am taking the afternoon off to get a haircut, shower and do my laundry. I will be back tonight.
I have been reading Jon excerpts from Barack Obama's "Audacity of Hope" last night. The must have given him some Democratic blood because he actually seems to enjoy it :)
Jon has a big day ahead with lots of family visitors, including Wyatt and Maelie which is always his highlight! I would ask anyone else to wait until later this evening or tomorrow to come by. I am taking the afternoon off to get a haircut, shower and do my laundry. I will be back tonight.
Friday, January 16, 2009
The official word from the GI docs is they believe that the bleeding has stopped. Jon still has some dark red in his stool but that appears to be old blood from the original bleed. They have finally allowed him clear liquids like water, broth and sprite. Tomorrow he should be able to start on some soft food.
I also spoked to the oncologists who say that it is too soon to consider the Y90 embolization due to the risk of bleeding. Dr. Goswami wants Jon a month of getting stonger before he will consider it. It is rumored that he will be by for a visit sometime this week. We are also completing the paperwork on the Revlamide (oral maintenance chemo) which will probably be our only option for the next month to keep the cancer at bay until we can move forward with the embolization or Photodynamic Therapy.
I also spoked to the oncologists who say that it is too soon to consider the Y90 embolization due to the risk of bleeding. Dr. Goswami wants Jon a month of getting stonger before he will consider it. It is rumored that he will be by for a visit sometime this week. We are also completing the paperwork on the Revlamide (oral maintenance chemo) which will probably be our only option for the next month to keep the cancer at bay until we can move forward with the embolization or Photodynamic Therapy.
After the bathroom episode there was some concern that Jon may still be bleeding internally. He continues to have bright red blood in his stool but it could be the residuals that were in his digestive system prior to the repair. The docs are awaiting his next bowel movement and if blood remains they are going back in with the endoscope. He is thoroughly not impressed because they promised him clear liquids at noon and the poor guy hasn't had anything significant to drink in days. I am able to give him some ice chips and sneak him a little Sprite from time to time. If everything is clear on the next old Number Two they will let him start on liquids and progress to soft foods. He also had an episode of chills and high blood pressure last night. They drew more blood cultures and started him on prophylactic antibiotics. His blood pressure is better today so that might just have been a result of the fluid building up in his bladder before he used the bathroom.
He is still very weak and sleepy. He is taking minimal pain meds so he's not as dopey as yesterday. I asked him if he felt and better at all and he said no. Even if they have stopped the bleeding I would imagine it will take him a while to gain his strength back. I've lost count of how many bags of blood he's received but it has got to be around 15 by now.
The current plan is to watch for bleeding, continue antibiotics and blood transfusions. If he gets worse they will do an endoscope and angiogram to find and fix any other bleeds. If he gets better we're going to meet with Dr. Gosswami about the Y90. Either way, we will be here for a while.
He is still very weak and sleepy. He is taking minimal pain meds so he's not as dopey as yesterday. I asked him if he felt and better at all and he said no. Even if they have stopped the bleeding I would imagine it will take him a while to gain his strength back. I've lost count of how many bags of blood he's received but it has got to be around 15 by now.
The current plan is to watch for bleeding, continue antibiotics and blood transfusions. If he gets worse they will do an endoscope and angiogram to find and fix any other bleeds. If he gets better we're going to meet with Dr. Gosswami about the Y90. Either way, we will be here for a while.
I left Jon's room this morning for 10 minutes to get a cup of coffee, when I returned Jon was not in his bed and his nurse was scurrying around in a huff. He had decided after barely moving for 72 hrs it was time to get up and go to the bathroom, alone. He had pulled out all his wires and monitors, but salvaged the IVs. The nurse was so frazzled and pissed off but I just had to laugh and tell her " He must be feeling better". Typical Jon! She put an alarm on his bed and a bed pan. I told her there's no way he will use that so let's just agree that if I leave for 5 minutes I will let her know and wecan just help him to the bathroom next time
Thursday, January 15, 2009
The Tale of The Day
When Jon's hematacrit dipped to 20 everyone started moving quickly. They had him in special procedures by 11:45 am. The tech told me the procedure would take about 15 minutes, possibly longer if they found something. When they didn't return in the hour I took it as a positive sign that they found the bleed and were repairing it. As it turns out it was coming from the esophagus and when the doctor went in the vessels were gushing blood. It is a condition called esophageal varices that often results from increased pressure in the liver and portal vein. The doctors at Auburn Medical saw the varices but didn't tie them off because they were not actively bleeding at the time of the scope. UWMC position is that they always treat them when they find them as the varices can result in spontaneous bleeds.
He toleratled the procedure well although he fought the doc on the repair so they had to dope him up pretty good. Levi met me at the hopsital after work and Kristi followed so they could sit with him while I went home, showered, dinner and payroll. He is in ICU, not because his condition worsened but because he requires close monitoring. In the Oncology Wing it is 2 patients for every nurse, in ICU its a 1:1 ratio. A far cry from the care he's had a Auburn. I am at the office now finishing up some work and heading back for the night. I will stay through tomorrow as I want the opportunity to talk to the "Team" about further options for his cancer treatment. My hope is that Jon will be released by early next week.
He toleratled the procedure well although he fought the doc on the repair so they had to dope him up pretty good. Levi met me at the hopsital after work and Kristi followed so they could sit with him while I went home, showered, dinner and payroll. He is in ICU, not because his condition worsened but because he requires close monitoring. In the Oncology Wing it is 2 patients for every nurse, in ICU its a 1:1 ratio. A far cry from the care he's had a Auburn. I am at the office now finishing up some work and heading back for the night. I will stay through tomorrow as I want the opportunity to talk to the "Team" about further options for his cancer treatment. My hope is that Jon will be released by early next week.
Life at the UW
We were awoken by the "Team" this morning. It was seven doctors; oncologist, hematologists, hospitalists etc. That didn't even include the GI guys/girls. They reviewed Jon's case and we discussed short term goals (stop the bleeding) and long term goals (cure the cancer). The GI specialists came next. They have decided to move forward with a different type of endoscope then had been done at Auburn. With this scope they can look sideways into the pancreas which is one of the main suspects in the bleeding. That should be done this morning and if it is negative they will move to the angiography studies and interventional radiology.
Jon did fairly well last night. He slept good and didn't have any vomiting. They told us this morning that his hematocrit had dropped significantly during the night (at 20, the lowest yet) so they are moving quickly to get these studies going. The nursing staff has been excellent and Jon's nurse today is a very pretty young women so that always cheers him up. It's been interesting this past few weeks that we have had far more female doctors and male nurses. Jon always asks me when women took over the world. I told him it happened a long time ago, he just hasn't been paying attention until he and I started dating!
Jon and I always have a policy that at the end of the day everything has to be funny. Even in this week we have managed to share some humor...He has received 10 pints of blood so far. If you're not aware, that is the entire amount of blood in a guy his size so basically his entire blood supply has been replaced. Last night, Levi, Dan, Nichole, Kelsey, Lori B and I were laughing about the type of blood he received. We decided they have given him female, liberal, democratic blood and he would awake a different person. Can you see him as a peace-loving, philanthropist, flower child?! We told him Christine Gregiore (our Democratic Governor) stopped by and donated a pint for him last night :)
We have a nice room with a beautiful view of Lake Washington and UW marina. I like staying here better than any other hospital because I get a comfy chair that folds out into a bed. I will have to go back to work at some point so I might need to start scheduling shifts with family members so we can all take turns sitting with Jon. Everyone from family, friends, staff and coworkers have been a great help this week and I truly appreciate all of you!
Jon did fairly well last night. He slept good and didn't have any vomiting. They told us this morning that his hematocrit had dropped significantly during the night (at 20, the lowest yet) so they are moving quickly to get these studies going. The nursing staff has been excellent and Jon's nurse today is a very pretty young women so that always cheers him up. It's been interesting this past few weeks that we have had far more female doctors and male nurses. Jon always asks me when women took over the world. I told him it happened a long time ago, he just hasn't been paying attention until he and I started dating!
Jon and I always have a policy that at the end of the day everything has to be funny. Even in this week we have managed to share some humor...He has received 10 pints of blood so far. If you're not aware, that is the entire amount of blood in a guy his size so basically his entire blood supply has been replaced. Last night, Levi, Dan, Nichole, Kelsey, Lori B and I were laughing about the type of blood he received. We decided they have given him female, liberal, democratic blood and he would awake a different person. Can you see him as a peace-loving, philanthropist, flower child?! We told him Christine Gregiore (our Democratic Governor) stopped by and donated a pint for him last night :)
We have a nice room with a beautiful view of Lake Washington and UW marina. I like staying here better than any other hospital because I get a comfy chair that folds out into a bed. I will have to go back to work at some point so I might need to start scheduling shifts with family members so we can all take turns sitting with Jon. Everyone from family, friends, staff and coworkers have been a great help this week and I truly appreciate all of you!
Wednesday, January 14, 2009
I am home briefly while the ambulance transfers Jon to the UW. Jon, Kelsey, Nadine, Lori B and I were scheduled to go to the Governor's Ball tonight in Olympia but obviously Jon and I won't be going. Kristi is driving the kids right now and they will meet Lori B down there. I feel like most of Kelsey's adolescence has been consumed with Jon's cancer and we try to keep his life as normal as it can be under these circumstance. Dan is sitting with Jon until I get to Seattle.
Jon rested comfortably all day and was medicated during the procedures. Still no bleeding site but the UW is equipped with a higher level of diagnostic and treatment procedures. I'm going to call Dr. Chue on my way to UW tonight.
Jon rested comfortably all day and was medicated during the procedures. Still no bleeding site but the UW is equipped with a higher level of diagnostic and treatment procedures. I'm going to call Dr. Chue on my way to UW tonight.
Jon vomited some more blood around midnight at which point they repeated the Tagged Red Cell Study. Looks like this time they were able to find a suspicous area in his small intestine. They are going to repeat the CT angiogram this morning concentrating on that area. In doing so, they should be able to find the bleed and repair it. Alleluia, Keep your prayers and positive thoughts coming that this is finally it!
He's still receiving blood transfusions (9 pints so far) but hemoglobin and hematocrit are staying stable. They have also been giving him dilauded every 4 hours which keeps him dopey but comfortable.
He's still receiving blood transfusions (9 pints so far) but hemoglobin and hematocrit are staying stable. They have also been giving him dilauded every 4 hours which keeps him dopey but comfortable.
Tuesday, January 13, 2009
Thanks Pam, I will call you if I think of anything. Jon is enjoying visitors but with a cold you should do it at a little distance (you can visit but no kissing :)) His white counts are actually OK right now without chemo so he's not particularly susceptible to infection.
He is still bleeding internally and has received 7 pints of blood. They continue the tagged red cell study through the night and is probably our best chance to see the bleed. It is beyond me that we can't find the source with the volume of blood coming out of him. There is another procedure where they can give him a pill with a camera inside that will pass through his digestive system. If they can't isolate the bleeding in the next day or so they plan on sending him to UW or Swedish.
Jon is petitioning the doctors and nurses to give him an exacto knife to cut out his tumor. I think the dilauded makes him even more colorful than his normal self. In all seriousness, I am taking his scans in tonight so the surgeons can evaluate whether or not surgery is a possibility. It seems to be the consensus of the doctors that the bleed is coming from a tumor in his pancreas even though they can't actually see it.
We have had excellent nurses, all men so far. I think the word is out on Jon and they know men definitely work better than women for him. Our nurse today is Vladimar from the Ukraine and he is absolutely awesome (at nursing and dealing with Jon). Ironically he graduated nursing school from Seattle Pacific with our daughter-in-law, Ericka.
So I'm on my way back to the hospital. Kristi and Tony have been "holding down the fort" while I come home for dinner and scan reports. Hopefully tonight we will have some answers.
He is still bleeding internally and has received 7 pints of blood. They continue the tagged red cell study through the night and is probably our best chance to see the bleed. It is beyond me that we can't find the source with the volume of blood coming out of him. There is another procedure where they can give him a pill with a camera inside that will pass through his digestive system. If they can't isolate the bleeding in the next day or so they plan on sending him to UW or Swedish.
Jon is petitioning the doctors and nurses to give him an exacto knife to cut out his tumor. I think the dilauded makes him even more colorful than his normal self. In all seriousness, I am taking his scans in tonight so the surgeons can evaluate whether or not surgery is a possibility. It seems to be the consensus of the doctors that the bleed is coming from a tumor in his pancreas even though they can't actually see it.
We have had excellent nurses, all men so far. I think the word is out on Jon and they know men definitely work better than women for him. Our nurse today is Vladimar from the Ukraine and he is absolutely awesome (at nursing and dealing with Jon). Ironically he graduated nursing school from Seattle Pacific with our daughter-in-law, Ericka.
So I'm on my way back to the hospital. Kristi and Tony have been "holding down the fort" while I come home for dinner and scan reports. Hopefully tonight we will have some answers.
Jon had an OK night. His room is right next to the nurses station so it's fairly noisy and the door to his room is all glass (really weird) so the light from the hallway all comes into his room. The nurses also have to monitor his vitals through the night and keep the transfusions and meds going so they wake him up regularly. He vomited once during the night which still contained some blood. Since that has happened I am going to request the radiocative blood tag test today, he has to still be bleeding from somewhere to have blood in his bile and stool.
He seems to be enjoying visitors and I appreciate the help from everyone. Jon says friends and family are welcome to stop by but he might ask you to keep your visit short.
Thank you for all of the continued positive thoughts, prayers, and encouraging words, we need them now more than ever!
He seems to be enjoying visitors and I appreciate the help from everyone. Jon says friends and family are welcome to stop by but he might ask you to keep your visit short.
Thank you for all of the continued positive thoughts, prayers, and encouraging words, we need them now more than ever!
Monday, January 12, 2009
Back at Auburn Regional Medical
Jon was feeling a little punky on Sunday, enough not to go duck hunting or church, neither of which he misses often. We went to Fred Meyer for a few groceries and while we were there he broke out in a cold sweat and felt very weak. When we got home he said he just needed to rest and would be fine. We had plans to go out to dinner to celebrate Ericka and Kelsey's birthdays but he decided to stay home to rest and watch some football.
In the middle of the night I heard him in the bathroom, when I went to check on him he was sitting on the toilet, vomiting blood all over the bathroom. He didn't want to go to the hospital and promised he would go in the morning. In another hour he was up vomiting all over again and finally agreed to go to the ER R 2:30am.
This time the care was excellent from the minute we walked in the door. They remembered him from last week and got him immediately into a room and on an IV. He was vomiting so much blood that they started blood transfusions immediately. Once they got him admitted the did another endocscopy but where unable to find the bleed. The doctor did, however remove all the blood and clots from his stomach which helped him feel better. Next they repeated the abdominal angiogram but again couldn't find the bleed. So far he's received 4 pints of blood and IV protonix to stop the bleeding. At this point it seems to have stopped but it's disconcerting that we can't find the source. I told the GI doctors that taking him home to "watch and see" if he bleeds again is an unacceptable option and that when I called to make a GI specialist appointment they couldn't get him in until January 26. The doctor said he would write a standing order for a radiation blood tagging procedure and we could come immediately if we suspected any bleed. He would also then be seen immediately by the GI specialist on duty.
A day or two ago I noticed Jon's breath having a strange odor. After he vomited blood I could tell that is what I had been smelling. Jon also neglected to tell me that he was having black diarrhea again on Sunday night. I will be now more aware of watching for the smell and hopefully Jon will report any more bleeding from the other end and we can go in immediately for the test.
With the bleeding we cannot proceed with chemo or any other treatments at this point except for maybe the revlamide (oral chemo that is more of a maintenance that treatment). I am hoping Jon will be released from the hospital by Wednesday, his color was good and he was stabilized so I am spending the night at home. I need to get some real sleep and spend time with Kelsey. Thanks to everyone who came by to sit with Jon so I could come home and get everything cleaned up. I'll be back at the hospital first thing tomorrow morning.
In the middle of the night I heard him in the bathroom, when I went to check on him he was sitting on the toilet, vomiting blood all over the bathroom. He didn't want to go to the hospital and promised he would go in the morning. In another hour he was up vomiting all over again and finally agreed to go to the ER R 2:30am.
This time the care was excellent from the minute we walked in the door. They remembered him from last week and got him immediately into a room and on an IV. He was vomiting so much blood that they started blood transfusions immediately. Once they got him admitted the did another endocscopy but where unable to find the bleed. The doctor did, however remove all the blood and clots from his stomach which helped him feel better. Next they repeated the abdominal angiogram but again couldn't find the bleed. So far he's received 4 pints of blood and IV protonix to stop the bleeding. At this point it seems to have stopped but it's disconcerting that we can't find the source. I told the GI doctors that taking him home to "watch and see" if he bleeds again is an unacceptable option and that when I called to make a GI specialist appointment they couldn't get him in until January 26. The doctor said he would write a standing order for a radiation blood tagging procedure and we could come immediately if we suspected any bleed. He would also then be seen immediately by the GI specialist on duty.
A day or two ago I noticed Jon's breath having a strange odor. After he vomited blood I could tell that is what I had been smelling. Jon also neglected to tell me that he was having black diarrhea again on Sunday night. I will be now more aware of watching for the smell and hopefully Jon will report any more bleeding from the other end and we can go in immediately for the test.
With the bleeding we cannot proceed with chemo or any other treatments at this point except for maybe the revlamide (oral chemo that is more of a maintenance that treatment). I am hoping Jon will be released from the hospital by Wednesday, his color was good and he was stabilized so I am spending the night at home. I need to get some real sleep and spend time with Kelsey. Thanks to everyone who came by to sit with Jon so I could come home and get everything cleaned up. I'll be back at the hospital first thing tomorrow morning.
Friday, January 9, 2009
Today was my turn to wake Jon for the IV antibiotics...of course I was much nicer, it was only 6:30am and I only had to do it in time to be completed before I went to work! He ended up going back to bed and sleeping until about 10:30. He was fairly productive all day, meeting some contractors at his dental building in Burien. He was also supposed to have some blood work done today, told me he did it in the morning but then when we met for dinner tonight admitted he lied and never had it done at all. Have I ever mentioned that he truly is the world's most difficult patient?!?! Tonight he has asked me to de-access his port after I give him the last dose of antibiotics. Normally I would decline, but the port-a-nurse put such a giant needle in there I think I might actually do it to spare him the pain. I will call Ericka (our RN, daughter-in-law) if I run in to any problems.
I spoke to the Photodynamic Therapy doctors in London and at Virginia Mason today. The British doctors declined Jon's case as they have only treated primary, not metastatic cancers. I had a little better luck with the Virginia Mason doctors in Seattle who are doing PDT for metastatic esophageal cancer. They were hesitant, but said if I sent the records they would review the case and consider the procedure. We will go ahead and have Jon's records sent while simultaneously evaluating the oral chemo vs the POLF vs the Y90. It is never an easy or simple decision. So far there have not been any additional signs of bleeding (although since Jon skipped the labs today we have no measure of his hemoglobin or hematocrit) but his color and energy are fairly decent. He is still swollen up like a balloon but we have found that Epsom salts baths seem to help.
Tomorrow he and Levi go duck hunting while Kelsey and I clean up after the storm around the house. If I haven't mentioned it before, Kelsey is raising two pigs for an FFA high school project which are living in our reinforced dog kennel. They managed to escape before the snow hit and did a pretty good job of digging up the yard...Kels will be working on that tomorrow, too. The whole pig thing is quite amusing. They should get to around 300 pounds and he will sell them at the Puyallup Spring Fair.
I have a girls night planned on Saturday at Lori B.'s where we will paint ceramics, drink wine, eat good food and talk about our crazy men with a group of girlfriends. I am looking forward to a little R&R. Sunday is church and then a family dinner at the Cheesecake Factory to belatedly celebrate Ericka and Kelsey's birthdays.
I spoke to the Photodynamic Therapy doctors in London and at Virginia Mason today. The British doctors declined Jon's case as they have only treated primary, not metastatic cancers. I had a little better luck with the Virginia Mason doctors in Seattle who are doing PDT for metastatic esophageal cancer. They were hesitant, but said if I sent the records they would review the case and consider the procedure. We will go ahead and have Jon's records sent while simultaneously evaluating the oral chemo vs the POLF vs the Y90. It is never an easy or simple decision. So far there have not been any additional signs of bleeding (although since Jon skipped the labs today we have no measure of his hemoglobin or hematocrit) but his color and energy are fairly decent. He is still swollen up like a balloon but we have found that Epsom salts baths seem to help.
Tomorrow he and Levi go duck hunting while Kelsey and I clean up after the storm around the house. If I haven't mentioned it before, Kelsey is raising two pigs for an FFA high school project which are living in our reinforced dog kennel. They managed to escape before the snow hit and did a pretty good job of digging up the yard...Kels will be working on that tomorrow, too. The whole pig thing is quite amusing. They should get to around 300 pounds and he will sell them at the Puyallup Spring Fair.
I have a girls night planned on Saturday at Lori B.'s where we will paint ceramics, drink wine, eat good food and talk about our crazy men with a group of girlfriends. I am looking forward to a little R&R. Sunday is church and then a family dinner at the Cheesecake Factory to belatedly celebrate Ericka and Kelsey's birthdays.
Thursday, January 8, 2009
Jon drug me out of bed this morning at 4am to give him his antibiotics so he could leave for duckhunting at 5 am with his buddy, Rex. Someday I will get him for all of these antics, my sleep is already screwed up for all the sleepless nights at the hospital!! He's been gone all day and called saying he actually feels good today. His stomach is still huge and the doctors all say the only way to address the ascites permanently is to treat the liver and they can't treat the liver until they are sure the bleeding has stopped. So far so good with no additional signs of bleeding. He has a blood draw tomorrow (if he can squeeze it in around duck hunting) to check his hemoglobin and hematocrit and if it all looks good we will proceed with chemotherapy on Tuesday. We've been discussing whether of not it might be better to do chemo every other week or when we should consider trying the Y90 in the liver. We will talk to Dr. Chen about all of it on Tuesday. I did make Jon and appointment with the GI specialist from the hospital but the couldn't get him in until the end of January. He is on a cancellation list so we might get in sooner. He would be the doctor who would be most qualified to locate the source of the bleeding should it continue.
I found a doctor in Virginia who has already completed a Phase II study on metastatic liver cancer with Photodynamic Therapy. It was for cancer that originated in the gall bladder, esophagus, and liver so I don't know if he would be willing to do Jon or if our insurance would pay for it but it's worth some investigation. I also have calls into Swedish and Virginia Mason in Seattle who have done some PDT in the lungs and liver but again, I don't know if they would treat Jon. Apparently it has been done for years in Europe so we always have the option to travel but that might be too difficult for Jon so we're keeping our fingers crossed that the local studies will be completed by spring and he can have it locally.
I found a doctor in Virginia who has already completed a Phase II study on metastatic liver cancer with Photodynamic Therapy. It was for cancer that originated in the gall bladder, esophagus, and liver so I don't know if he would be willing to do Jon or if our insurance would pay for it but it's worth some investigation. I also have calls into Swedish and Virginia Mason in Seattle who have done some PDT in the lungs and liver but again, I don't know if they would treat Jon. Apparently it has been done for years in Europe so we always have the option to travel but that might be too difficult for Jon so we're keeping our fingers crossed that the local studies will be completed by spring and he can have it locally.
Wednesday, January 7, 2009
He Really Is One of a Kind
After a week in bed, Jon got up today, had his IV antibiotics and went to the duck club to put up his new duck blind...all day...in the rain, I mean monsoon. There are flood warings and road closures all over Washington. Now he want to go out to dinner?!
Tuesday, January 6, 2009
You know, some days I don't even know where to start...this was a very long and eventful day.
I picked Jon up at the hospital after work last night. They had drained his abdomen and he had an "inny" bellybutton for the first time in a long time. He felt good enough to go out to dinner and we were both ecstatic to be eating something other then hospital food (OK, really I only ate vending machine food for 5 days as the visitors cafe was closed every time I tried to eat there) Fresh vegetables never tasted so good in my life! Jon ate a good dinner and seemed in good spirits.
We awoke early for our day of doctors appointments only to find Jon's abdomen distended all over again. It seems the pericentisis only lasted about 12 hours. Very disappointing. His first appointment of the day was with Darren, the acupuncturist. There has been all kinds of controversy at SCTWC in Dr. Chue's absence so in addition to the acupuncture we talked about all of the politics of cancer. (can you believe it?) Darren tried some acupuncture points to reduce Jon's ascites and he seemed to rest comfortably during the hour. Next came Dr. Chen, it was kind of an odd visit. He had stopped by to see Jon earlier while I was making the Starbucks run for Jon's breakfast and then returned to talk with me. I'm not sure what happened in my absence but Dr. Chen seemed to have a bit of a chip on his shoulder. When I asked him how we should proceed he almost shrugged his shoulders. After a long discussion we agreed that the genetic testing needed to proceed to determine whether or not Erbutux is an option for Jon. Dr. Chen did not support the Xoloda or Revlimid as the Xoloda could potentially cause more GI bleeding and the Revlimid alone was not proven to be effective. He felt our best option was to wait until we were sure that the abdominal bleeding has stopped (which we are not) and to proceed with the POLF IV chemotherapy. Next came Dr. Reilly, the naturopath who was the high point of our day. He had some good dietary suggestions to control the ascites and some supplements to reduce the irritation and possible bleeding in Jon's GI tract. He agreed that we needed to be sure the bleeding has stopped before we continue any more treatment. He and I agreed that we should follow up with the GI specialist to see if there is additional testing to be done. Jon still has some dark stools from time to time and his hemoglobin and hematocrit have dropped slightly since he left the hospital. It is also possible that some of the tests would only detect the bleeding if it was actively occurring during the test. If his counts drop by the end of the week we may need to repeat the tests.
On the way home I called the hospital to get the name and telephone number of the GI specialist that treated him so we can schedule a follow up appointment. Of course, nothing is ever simple and I've been playing telephone tag with the staff all night. I expect to have the information we need by tomorrow.
Next came the Home Infusion Nurse at 4pm. She was an interesting women and on a normal day Jon would have enjoyed her personality. She is a sort of rough, redneck gal whose father hunter ducks and grew up with all brothers....they kind of gal I would think he could actually relate to! She was doing OK until she stuck the giant, wrong size needle into his port and sent him through the roof. Jon is never one to actually complain about pain so you know it must have been really bad. The only good thing I could say about that visit is that when Jon was being really difficult and irritable she said to him that she had a patient much younger than him with pancreatic cancer and three little girls who never behaved that way. I do think its always a good reminder to hear that someone has it worse of than ourselves.
Jon had a big long nap after that escapade while I grocery shopped and filled his prescription. He was in much better spirits when I arrive home (I did give him an oxycodone before I left) and we just finished dinner at about 9:30 pm. I did his first IV antibiotic infusion and it seemed to go well. He needs them twice a day for the next week.
So for now we just need to watch for any signs of bleeding, follow up with the lab and GI doctor. He is scheduled for chemotherapy next Tuesday and will receive it if he is stable enough.
I picked Jon up at the hospital after work last night. They had drained his abdomen and he had an "inny" bellybutton for the first time in a long time. He felt good enough to go out to dinner and we were both ecstatic to be eating something other then hospital food (OK, really I only ate vending machine food for 5 days as the visitors cafe was closed every time I tried to eat there) Fresh vegetables never tasted so good in my life! Jon ate a good dinner and seemed in good spirits.
We awoke early for our day of doctors appointments only to find Jon's abdomen distended all over again. It seems the pericentisis only lasted about 12 hours. Very disappointing. His first appointment of the day was with Darren, the acupuncturist. There has been all kinds of controversy at SCTWC in Dr. Chue's absence so in addition to the acupuncture we talked about all of the politics of cancer. (can you believe it?) Darren tried some acupuncture points to reduce Jon's ascites and he seemed to rest comfortably during the hour. Next came Dr. Chen, it was kind of an odd visit. He had stopped by to see Jon earlier while I was making the Starbucks run for Jon's breakfast and then returned to talk with me. I'm not sure what happened in my absence but Dr. Chen seemed to have a bit of a chip on his shoulder. When I asked him how we should proceed he almost shrugged his shoulders. After a long discussion we agreed that the genetic testing needed to proceed to determine whether or not Erbutux is an option for Jon. Dr. Chen did not support the Xoloda or Revlimid as the Xoloda could potentially cause more GI bleeding and the Revlimid alone was not proven to be effective. He felt our best option was to wait until we were sure that the abdominal bleeding has stopped (which we are not) and to proceed with the POLF IV chemotherapy. Next came Dr. Reilly, the naturopath who was the high point of our day. He had some good dietary suggestions to control the ascites and some supplements to reduce the irritation and possible bleeding in Jon's GI tract. He agreed that we needed to be sure the bleeding has stopped before we continue any more treatment. He and I agreed that we should follow up with the GI specialist to see if there is additional testing to be done. Jon still has some dark stools from time to time and his hemoglobin and hematocrit have dropped slightly since he left the hospital. It is also possible that some of the tests would only detect the bleeding if it was actively occurring during the test. If his counts drop by the end of the week we may need to repeat the tests.
On the way home I called the hospital to get the name and telephone number of the GI specialist that treated him so we can schedule a follow up appointment. Of course, nothing is ever simple and I've been playing telephone tag with the staff all night. I expect to have the information we need by tomorrow.
Next came the Home Infusion Nurse at 4pm. She was an interesting women and on a normal day Jon would have enjoyed her personality. She is a sort of rough, redneck gal whose father hunter ducks and grew up with all brothers....they kind of gal I would think he could actually relate to! She was doing OK until she stuck the giant, wrong size needle into his port and sent him through the roof. Jon is never one to actually complain about pain so you know it must have been really bad. The only good thing I could say about that visit is that when Jon was being really difficult and irritable she said to him that she had a patient much younger than him with pancreatic cancer and three little girls who never behaved that way. I do think its always a good reminder to hear that someone has it worse of than ourselves.
Jon had a big long nap after that escapade while I grocery shopped and filled his prescription. He was in much better spirits when I arrive home (I did give him an oxycodone before I left) and we just finished dinner at about 9:30 pm. I did his first IV antibiotic infusion and it seemed to go well. He needs them twice a day for the next week.
So for now we just need to watch for any signs of bleeding, follow up with the lab and GI doctor. He is scheduled for chemotherapy next Tuesday and will receive it if he is stable enough.
Monday, January 5, 2009
Sunday, January 4, 2009
I spoke with all of the doctors today and it is unanimous that Jon needs to have the fluid drained from his abdomen. Dr. Chue cautioned that they not remove more than 2 liters at a time as that might cause his body to send all of the fluid from his blood vessels to his abdomen due to the sudden change in osmotic pressure (which could dangerously lower his blood pressure). He also cautioned against the use of diuretics for the same reason and agreed that utilizing natural methods such as supplements and acupuncture would be the best course. I do have a call in to Dr. Reilly (naturopath) but have not heard back from him yet. Jon is scheduled for acupuncture on Tuesday.
Jon is also scheduled to have the procedure tomorrow morning and is expected to come home later in the day. I am home right now cooking dinner for Kelsey and I, while trying to catch up on some work from the office. I've barely seen Kelsey all week and really need some quality time with my son.
Levi and Maelie came by for a visit and as always Maelie was a complete delight. The nurses had some concerns about Jon's exposure to any bacteria she might bring but honestly her presence does him more good than any potenial bacterial threat. Besides, his white count is actually better now than it usually is, I think the hospital just isn't used to the life we live.
Elizabeth has been visiting her friends in Spokane all week and calls me ten times a day worrying about Jon. I keep assuring her that if we needed her to come home immediately we would tell her. She is scheduled to come back tomorrow but there is a major winter storm brewing in the Cascades so I hope the Pass is open and she can get home as planned.
After dinner I will go back to the hospital for a visit. I'm bringing some of the wonderful homemade soaps we received from Staci for Christmas so that Jon can take a shower and finally get cleaned up.
Jon was all pissed off at his doctors when I left this afternoon. He basically can't believe that he's been complaining to them for the last month about his abdominal distention and they all kept telling him it was from the tumors not from fluid build up (secondary to the tumors). He's been telling me for months that he doesn't need me to help him or take him to chemo because it's really difficult for him to depend on anyone. I reminded him that the doctors can be so narrowly focued that it's good to have someone around who looks at the whole picture. Hopefully, someday, he will gain an appreciation of that.
Jon is also scheduled to have the procedure tomorrow morning and is expected to come home later in the day. I am home right now cooking dinner for Kelsey and I, while trying to catch up on some work from the office. I've barely seen Kelsey all week and really need some quality time with my son.
Levi and Maelie came by for a visit and as always Maelie was a complete delight. The nurses had some concerns about Jon's exposure to any bacteria she might bring but honestly her presence does him more good than any potenial bacterial threat. Besides, his white count is actually better now than it usually is, I think the hospital just isn't used to the life we live.
Elizabeth has been visiting her friends in Spokane all week and calls me ten times a day worrying about Jon. I keep assuring her that if we needed her to come home immediately we would tell her. She is scheduled to come back tomorrow but there is a major winter storm brewing in the Cascades so I hope the Pass is open and she can get home as planned.
After dinner I will go back to the hospital for a visit. I'm bringing some of the wonderful homemade soaps we received from Staci for Christmas so that Jon can take a shower and finally get cleaned up.
Jon was all pissed off at his doctors when I left this afternoon. He basically can't believe that he's been complaining to them for the last month about his abdominal distention and they all kept telling him it was from the tumors not from fluid build up (secondary to the tumors). He's been telling me for months that he doesn't need me to help him or take him to chemo because it's really difficult for him to depend on anyone. I reminded him that the doctors can be so narrowly focued that it's good to have someone around who looks at the whole picture. Hopefully, someday, he will gain an appreciation of that.
Jon has been moved to room 456, a much nicer room in the new part of the hospital. He is in good spirits this morning and says he feels better than he's felt in a long time. He had asked me to bring our first back packing trip and his Alaska photo album to the hospital last night and was very chatty, showing it to the nurses on the floor.
I finally came home from the hospital and spent the night in my own bed. It is amazing how much eight hours of sleep in a normal bed can help! I feel almost human again and don't realize how exhausted I get when we go through the episodes until I finally get a chance to sleep.
I've been contemplating Jon's abdominal distension and have come to the conclusion that it is not the tumor but a condition called ascites that is a common sequala to pancreatic cancer. It can occur from a tumor rupturing (which is what we think caused the bleeding) or metastasis to the abdominal wall. The CT scan did not show any cancer in the abdominal wall so I am concluding that it is from a tumor rupture. The Hospitalist (Dr. Greenfield) also agreed that it appeared to be fluid. The treatment can be oral diuretics or using a needle to drain the abdomen. My concern with the oral diuretics is that they could potentially rob the rest of Jon's body of fluid when it needs to come from his abdomen. He has actually been extremely thirsty this week but rarely urinates, another sign that has led me to this diagnosis. In addition, when they give him too much IV his stomach swells to where it becomes very painful and they have to stop the IV. I'm not sure if they give him the diuretic how the body would know to take the fluid from the abdomen and not the rest of the cells in the body, however I'm hoping Dr. Greenfield can answer that question. I am going to call Dr. Chue, Chin and Reilly this afternoon to ask them if there is any risk at all to draining his abdominal cavity with a needle. I figure if we are going to take that approach we might as well do it while he's already in the hospital. I need to make sure there is no possibility that this procedure will disturb the cancer or have any other unforeseen risks.
I would encourage visitors today but be prepared for lots of hunting and backpacking stories, it seems Jon is getting back to his old self :)
I finally came home from the hospital and spent the night in my own bed. It is amazing how much eight hours of sleep in a normal bed can help! I feel almost human again and don't realize how exhausted I get when we go through the episodes until I finally get a chance to sleep.
I've been contemplating Jon's abdominal distension and have come to the conclusion that it is not the tumor but a condition called ascites that is a common sequala to pancreatic cancer. It can occur from a tumor rupturing (which is what we think caused the bleeding) or metastasis to the abdominal wall. The CT scan did not show any cancer in the abdominal wall so I am concluding that it is from a tumor rupture. The Hospitalist (Dr. Greenfield) also agreed that it appeared to be fluid. The treatment can be oral diuretics or using a needle to drain the abdomen. My concern with the oral diuretics is that they could potentially rob the rest of Jon's body of fluid when it needs to come from his abdomen. He has actually been extremely thirsty this week but rarely urinates, another sign that has led me to this diagnosis. In addition, when they give him too much IV his stomach swells to where it becomes very painful and they have to stop the IV. I'm not sure if they give him the diuretic how the body would know to take the fluid from the abdomen and not the rest of the cells in the body, however I'm hoping Dr. Greenfield can answer that question. I am going to call Dr. Chue, Chin and Reilly this afternoon to ask them if there is any risk at all to draining his abdominal cavity with a needle. I figure if we are going to take that approach we might as well do it while he's already in the hospital. I need to make sure there is no possibility that this procedure will disturb the cancer or have any other unforeseen risks.
I would encourage visitors today but be prepared for lots of hunting and backpacking stories, it seems Jon is getting back to his old self :)
Saturday, January 3, 2009
Change of Plans
When I returned to the hospital this afternoon we met with the "Hospitalist" (MD in charge of all of the patients on the floor), she informed us that the results of Jon's blood cultures were still inconclusive so she would be keeping Jon in the hospital until Monday so that he may continue to receive IV antibiotics. He will actually need to stay on them for 10 days, however on Monday they will be able to arrange for an Infusion nurse to come to the house, Jon, of course, asked if she was good-looking, the doctor replied, "No, not really.":).
I am disappointed that I can't bring him home today but, at the same time, I want to make sure that the infection is treated appropriately. Dan is on the docket to pick him up on Monday since I need to get back to work now that Jon is stablized).
Jon is still weak and tired so he didn't really seem to mind staying a few more days. He says visitors are welcome but please keep your visit short.
I am disappointed that I can't bring him home today but, at the same time, I want to make sure that the infection is treated appropriately. Dan is on the docket to pick him up on Monday since I need to get back to work now that Jon is stablized).
Jon is still weak and tired so he didn't really seem to mind staying a few more days. He says visitors are welcome but please keep your visit short.
We're heading home today! The GI physicians assistant came in this morning and confirmed that all the tests were negative and Jon's hematocrit and hemoglobin are on the low end of normal. He ate a full dinner of spaghetti (they were out of lasagna), cottage cheese and fruit last night and a breakfast of Cream of Lumps and pancakes this morning. He is still weak and his stomach distended but his color and demeanor are much improved. We are also awaiting the results of the peripheral blood tests to determine whether the staph infection was from his port or systemic through his blood. If it is from the port he can have oral antibiotics, if it's systemic I will need to give him IV antibiotics. We think we can do this at home now that he has the port.
We will meet with Dr. Chin on Tuesday to see where we go from here. Most likely oral chemo until we can do the Photodynamic therapy. The GP doctor at Auburn also thinks that Jon's distended stomach might be fluid and that there is a possibility that it could be drained. That would make him really happy as it is uncomfortable and limits how much he can eat. He also doesn't like looking like a regular, middle aged guy when he is so used to being "buff" his entire life.
Thanks to everyone who stopped by, called and sent us postive thoughts and prayers. Special thanks to Lori Belinski for assisting with supervising the nurses (dont' ever get sick on a holiday!), bringing me food and coffee, and posting the blog while I was away from the computer.
We will meet with Dr. Chin on Tuesday to see where we go from here. Most likely oral chemo until we can do the Photodynamic therapy. The GP doctor at Auburn also thinks that Jon's distended stomach might be fluid and that there is a possibility that it could be drained. That would make him really happy as it is uncomfortable and limits how much he can eat. He also doesn't like looking like a regular, middle aged guy when he is so used to being "buff" his entire life.
Thanks to everyone who stopped by, called and sent us postive thoughts and prayers. Special thanks to Lori Belinski for assisting with supervising the nurses (dont' ever get sick on a holiday!), bringing me food and coffee, and posting the blog while I was away from the computer.
Friday, January 2, 2009
No New News
All the tests, including the CT Angiogram, so far have been negative including the consideration of an aneurysm, and other more serious concerns such as the pancreas bleeding. The new decision is that it must have been the tumor that has been bleeding. The bleeding appears to have stopped for now and his hemoglobin and hematocrit are almost in the normal ranges. They have decided not to do the colonoscopy due to its discomfort, and the fact that they think it was not the lower colon that was bleeding. He is finally allowed to eat, after 3 days, and has been given dilaudid and is resting a great deal more comfortably.
Yes, Liz, we have been concerned that he may bleed to death, but as long as I am here with him that won't happen. All the nurses now check in with me for the real history of Jon's health concerns.
He is looking forward to his first meal of lasagne, and hoping to go home tomorrow. Once we get home, and Jon get's a duck hunt under his belt, we will check in with Dr. Chin.
Yes, Liz, we have been concerned that he may bleed to death, but as long as I am here with him that won't happen. All the nurses now check in with me for the real history of Jon's health concerns.
He is looking forward to his first meal of lasagne, and hoping to go home tomorrow. Once we get home, and Jon get's a duck hunt under his belt, we will check in with Dr. Chin.
Holiday Events Continue
Jon and I are still at the Auburn Regional Medical Center and waited all day yesterday for an endoscopy procedure to take place with hopes that we would have some answers as to where the bleeding is coming from. At 6pm they finally came to take him to the procedure and promised that it would be painless. I have come to learn that "painless" to a nurse doesn't always mean the same to a patient. After the procedure the doctor indicated that there was no sign of bleeding in the stomach and after talking with me about Jon's history he decided to go look a little further down, which probably didn't make Jon feel any better, but gave us more information. Still no sign of bleeding in that area. The Abbott and Costello nurses (otherwise known as Shouting Susan and Train Wreck Connie)returned Jon to his room refusing to recognize that his extreme discomfort was exactly what he had said, he had to use the bathroom! They thought that they knew better and kept trying to tell Jon that he really didn't, it was the side effects from the procedure. Because of the amount of medicine they gave him they would not let him up because he might fall. After convincing them I wouldn't let him get up, the nurses left and Jon beelined for the bathroom door and he felt much better! He was then given 2 pints of blood and some dinner, and just began feeling a little better...and then the real circus began. They discovered he had a staph infection and with IV tubes in both hands and antibiotics dripping in Jon didn't get much rest so visitors should call me first, and not stay too long.
The doctor was here a little while ago and since they still have not found the source of the bleeding she is considering all of the possible diagnostics necessary. She suggested that rather than to perform a very uncomfortable colonoscopy she would order a CT Angiogram. This procedure will see if there is bleeding in the pancreas and then they would have more information on the best approach after that.
I will remain at the hospital until I know where the bleeding is coming from, and what method will be taken to make it stop, and Jon is stable. Your New Year's prayers are welcome!
The doctor was here a little while ago and since they still have not found the source of the bleeding she is considering all of the possible diagnostics necessary. She suggested that rather than to perform a very uncomfortable colonoscopy she would order a CT Angiogram. This procedure will see if there is bleeding in the pancreas and then they would have more information on the best approach after that.
I will remain at the hospital until I know where the bleeding is coming from, and what method will be taken to make it stop, and Jon is stable. Your New Year's prayers are welcome!
Thursday, January 1, 2009
Another Eventful Holiday
Jon and I spent New Years Eve in the Auburn General Emergency Room to ring in 2009. Gezz, what a way to start a new year! He had been feeling crummy since he returned from having his port installed and spent most of Wednesday in bed while I was at work. In the cancer world that is not unusual so honestly I didn't think that much about it until I came home and he was still in pain and extremely tired. We called the Nurse Hotline to ask about the pain around his port and the fact that it was "left open" for the chemotherapy that was supposed to take place on Wednesday. He had me cancel the appointment because he was feeling so tired and wanted to have a week off. The nurse suggested that we go to the ER to have the port evaluated and insure that he wouldn't have to have another one put in. As he was up and moving around he became increasingly weak and short of breath. By the time we got to the ER he was extremely pale. It took the nurse about 15 minutes to figure out he was bleeding internally and they immediately got him into a private ER room and hooked up to IV. The tests confirmed he was bleeding from his stomach secondary to the chemotherapy. This particular chemo has always bothered his stomach but never quite to this degree. Since chemo targets rapidly dividing cells it kills not only tumors but red blood cells, white blood cells, platelets and the lining of your stomach. His blood work showed a hemoglobin of 6 and a hematocrit of 24, normal is 12 and 48 respectively. They gave him IV meds to stop the bleeding and two units of blood. He is looking much better this morning with some color in his face, but his vitals are still on the low end. They will be doing an endoscope today to be sure of the location of the bleed, he may also have more scans.
I just came home for a shower and to grab our cell charges so we can talk to all of you. He is ok for visitors although he asked that everyone keep there visits short. They think they will keep him 2-3 days to make sure he is stabilized. We plan on switching to the Revlimid as soon as it is available since there is no way Jon can tolerate any more of this POLF chemotherapy.
I just came home for a shower and to grab our cell charges so we can talk to all of you. He is ok for visitors although he asked that everyone keep there visits short. They think they will keep him 2-3 days to make sure he is stabilized. We plan on switching to the Revlimid as soon as it is available since there is no way Jon can tolerate any more of this POLF chemotherapy.
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