|Joe Elwood's Journey
Joe's end of life on this earth was early Sunday morning, December 27, 2015 with Joan by his side. At approximately 4:41 am, the machines stopped. There was no battle or fight. Joe went peacefully on his terms. This journey may be over, but a new one is beginning. Joe now gets to meet up with all the family and friends who have passed before us. Some may not believe, but Joan knows she will meet Joey again someday and he will have a class chardonnay with ice cubes in his hands to welcome her. Elwood Strong!
Joe had been doing well, but this past Saturday things changed a bit. He started getting weaker and was unable to get up by himself. On Sunday morning, he was worse and Joan called Dr. Jackman (medical oncologist) and the doctor indicated Joe should be brought to the emergency department at Brigham and Women's. Once there, they hydrated Joe and ran some tests. He was moved from the ED up to the 7th floor (oncology floor). Tests revealed Joe had pneumonia in both lungs, he was dehydrated, and was extremely weak. He was put on antibiotics and fluids. Monday was somewhat of an ok day, however, he didn't have a good nite/morning. He had a reaction to a medication. Medicate was changed. Tuesday morning wasn't so good either, however, he was still somewhat ok. This morning (Wednesday) Joan had a call that he had taken a not so good turn. His heart rate was way up and they had him on high oxygen and so Joe was moved to the ICU. Joe had a lot of fluid in his bladder that they were able to get out. This afternoon, the doctors were pretty certain that Joe has a blood clot in his lung. He is on heparin (blood thinner). Right now Joe is resting/sleeping comfortably in the ICU.
I will update as I know/hear more. Below is a Charlie Brown Christmas and family picture in Joe's room in the ICU.
So from the last update, the next step was Joe would have a port installed to deliver the chemotherapy. That was scheduled for Monday, Dec. 7th. However, Joe ended up in the emergency room on Friday December 4th because his g-tube (feeding tube) had blood. No ambulance. Joan brought him directly to Brigham and Women's ER. They did numerous tests, including another CT to make sure the tube was ok. Everything was cleaned, and the tube was fine. They were told that some fluid may leak out and there was a barrier type of ointment they could use around the skin area. So after a very, very, very long day.....Joe was able to come home. We went in on Monday Dec 7th to have the port installed. As they were prepping Joe, they did blood work and discovered that his potassium was way too high and they moved Joe over to the emergency room, with paddles! Joan was with Joe the whole time. After a few hours, it was discovered the lab apparently made a mistake! It's now late in the day and chemo is scheduled for the next day, but not without a port. Joan asked them to do it then, and it worked out. Port was installed and about 4-5 hours later, got Joe home.
On Tuesday, Dec 8th, brought Joe in to Dana Farber. He had blood work and met with the Doctor. Talked about the chemo, which doesn't take long, and the side effects associated with the Chemo. He will have chemo 2 weeks in a row, then off a week. And the cycle will keep repeating. Side effects are nausea, bloating, constipation, low blood counts, fever, etc. If fever gets to 100.4, a call goes to the Doctor immediately, regardless of the time of day. So Joe received the chemo as well as some hydration. A few days later, Joe started feeling nauseous and he started medication to stop it. Seems to be working.
This past Tuesday, Dec 15th, Joe went in again for his second chemo treatment of the first round. Had blood work and met with the Doctor again. Joe's white blood cells had a precipitous drop (side effect of chemo). Doctor had to wait to get his neutrophil count (which is a type of white blood cell that helps fight infection) in order to determine whether chemo could proceed. The count has to be at a minimum level, and if too low, it's not safe to do a chemo treatment. The count came in over the threshold, so chemo was on. But, they were going to lower the dose of chemo and Joe would have to come back the next day (at least 22 hours after the chemo) for a booster shot. This shot is to stimulate bone marrow which in turn, increases the white blood cells. He could get bone aches from the shot, and doctor said increase the steroids if that occurs. So Joe had the chemo and a little hydration. Doctor reviewed all Joe's medications (dropped folic acid).For the most part Joe's meds are now the inhalers, steroids, anxiety, pain meds, nausea med, and sodium.
So now 2 days after the chemo (and 1 day after the booster), Joe is doing good. He slept for quite a bit when he got home from the booster shot yesterday. He is nauseous and the meds seem to help out. His G-tube was leaking again today and, luckily, the visiting nurse showed up too. He said he thinks Joe is constipated as his stomach is tender and a bit swollen. He called the GP and left a message about a possible script, or maybe Joan will be lucky enough to give Joe a suppository! The biggest side effect of all the meds Joe is on.....is constipation. He is getting Miralax, but may need something stronger.
Joe now has a Personal Emergency Response System (iSAFE). If he happens to be home alone and has an emergency, he can just press a button and an alert goes out. The company will attempt to talk to Joe (via the unit) and if no response, an ambulance will come to the house. The service will also call Joan, John, Jeannette and Jeffrey at the same time to let them know an ambulance is on the way to the house. Joan will most likely call Tommy and/or Lisa to check on Joe upstairs (if they are home).
Joe has the next two weeks off from any appointments!!! His next treatment is Dec 29th and Jan 6th. Then the 3rd round begins on Jan 19th at which time a CT is scheduled to see if the chemo has killed any cancer cells and/or stopped it from spreading. Keep thinking positive thoughts....and Elwood Strong.
Joan's first selfie is below!
Joe had an appointment yesterday at Dana Farber for blood work and discuss possible next steps. There was some trouble getting the blood done and inserting an IV. They tried to use his right arm and no luck, so they had to do it on his left arm. When we went upstairs for his vitals, his blood pressure was 92/65 the first time and then 98/52 the second time. They also had to take blood again (thank goodness they still had the IV port in his hand) because the previous blood draw was all clotted. Then we met with Dr. Jackman who discussed the options again. He started off by saying that Joe looks good and we should look at the quality of life and how he is feeling. Then we should discuss therapies. Do nothing? And Joe is the way he is (which isn’t bad) or do we do a therapy and who knows what will happen. Joe again said he wants to try the chemo. So Doctor talked about doing what we discussed before, do chemo once a week for 2 weeks, and then a week off. He also talked about the chemo that’s been advertised on TV (Optivo), but he said that chemo is really for patients who are stronger and more mobile than Joe. Basically folks who are stronger, able to move around on their own, working, etc. Joe wants to do the 1st chemo. So then the Doctor indicated that Joe's sodium was low and his blood pressure is low. He felt that Joe is probably dehydrated. He discussed how much water he should be getting (1 liter per day), Joan will increase it. Also, because Joe's veins are weak, the Doctor wants a port to be installed (didn’t say where) for the chemo. Doesn’t want Joe to become a pin cushion. In addition, one of the side effects of this chemo is tissue damage at the IV site when infused. So better to have the port. Doctor said no chemo until port is installed. Joe also was having a major leaking problem with his feeding tube. He was soaked and there’s a lot of redness (similar to diaper rash). So we went over to the infusion area, they set him up with a saline drip to help with the potential dehydration and hopefully increase his sodium and BP and this was going to be 2 hours. After about an hour and a half, they realized he had to get over to the thoracic “out patient” area at B&W to get the feeding tube fixed. Got over there (after a lot of mix ups) and they fixed it. It was pretty painful for Joe. The doctor there said he would probably have to come back tomorrow. We found out at that time that not only did they want Joe to come back to get hydrated but apparently his white blood count is very high, which indicates infection, and they are concerned about the low blood pressure. They took his BP there and it was still only 98/56. They felt with the hydration he had in the past few hours, it should have gone up. When we got back home, Joe was pretty weak. There was a message that he would have an appointment the next day (today) at 1:00 for labs, then meet with Pam (Nurse Practitioner) at 2:00pm and then hydration again at 3:00pm.
Today we went back in. He had a blood draw and then we met with Pam. His white blood cells are higher than yesterday and his BP is lower (95/52). She wanted to know if Joe had any fevers, dizziness, constipation, diarrhea, etc. Anything to indicate an infection. Nothing. Wanted to get a urine sample but Joe had nothing to give! So for now, he was hydrated again. All blood pressure medication (not that he was getting much) is terminated as well as all cholesterol medication. Just need to keep an eye on any possible infection, although Pam indicated it could just be the cancer.
A port will be installed for the chemo. We have requested it be done at Faulkner for convenience sake, anytime between tomorrow and Monday. If not, it will be on Monday at Brigham & Women's. His chemo is set up for Tuesday beginning at 9:45 for blood, 10:30 Dr. Jackman and 11:30 chemo.
Joe is still in the German Home and is improving. He has physical therapy, speech therapy, etc. on a daily basis. He is currently in a private room because his white blood cells were so low. The blood counts have improved and, luckily, he is still in a private room. And getting stronger every day. Today was a scheduled chemo treatment day. The chemo was cancelled but the oncologist wanted to see Joe. So John and I brought him to the doctor. Dr. Jackman indicated Joe was beaten up by the chemo and the radiation and is currently pretty weak with low energy. Although the radiation made the mass in the chest area a bit smaller, the tumor on the adrenal got larger. If the chemo had worked, the tumor on the adrenal would not have gotten larger. Even though the tumor on the adrenal is growing, the doctor indicated it's not an immediate threat. So, after 2 cycles, this particular chemo protocol did not work. Dr. Jackman indicated they could do something different but that 3 things are of concern: will it work?, can Joe handle it?, and does Joe want to try something different (a different chemo). Doctor also indicated that sometimes when a person is away from chemo and radiation, folks get better. The Doctor worries that if Joe is given some other chemo, it may not work and the chances of it working are not high. Have to take quality of life into account. Doctor indicated he doesn't know if will work and he's not sure if Joe can handle it. But what does Joe want to do? After the initial chemo beat up Joe, does Joe want to focus on quality of life or, if Joe gets stronger, try another chemo. Joe wants to go for it. He wants to get stronger and try another chemo. So starting tomorrow, Joe will start taking steroids to give him more energy, more appetite (he's on a feeding pump), and maybe improve his breathing. This could bring him closer to trying a different form of chemo. If he doesn't get stronger, or if he gets the chemo and it doesn't work, then the Doctor indicated we have to consider that chemo is not an option any more.
Joe has an appointment on November 24th and, if he's strong enough, he will have the chemo that day. It's also possible if he's not strong enough, we may re-schedule the appointment for the following week. I talked to Dr. Jackman about the difference in this chemo vs. the previous chemo he had. The previous chemo was made up of 2 "cocktails" (one first and when it was finished, the second one) and it was at least a 4 hour process (not including the blood work, meeting with the doct, etc). . The doctor indicated they try to start with the chemo that has the best chance of working. The first didn't work, doesn't mean this next one won't work, or that one was better than the other. It's just different. However this treatment has a much shorter infusion time: it's 15 minutes. He will go in once a week for 2 weeks, then have a week off. I asked how long this would go on, and the Doctor indicated as long as it's working and/or Joe can tolerate the treatment. That's the oncology report.
As for the rehab at the German Home, Joe is getting stronger and he WANTS TO COME HOME (did I say that loud enough?). Although the staff there indicated they review patients every 2-3 weeks, they also indicated it is family driven. If Joan feels that Joe is strong enough, she can request he come home. If the staff feels he will be safe....then they will release Joe. If he does come home, the German Home will work with Dr. Jackman's office on the transition and get the visiting nurse and therapists back on schedule to visit Joe at home. The way it looks now, after talking to Joan today, might start pushing that button the middle of next week, assuming Joe continues to get stronger!
The picture on the side was this morning (probably around 8:00am). He was already to go to his doctors appointment! All week he was looking forward to escaping this joint and heading to the doctors!!
Joe wore his Elwood Strong sweatshirt and hat into Dana Farber today. Dr. Jackman thought it was pretty cool. Elwood Strong!!
October 28, 2015
New update: Joe has been moved from Brigham & Women's Hospital to the German Home (rehab) on 2222 Centre St in West Roxbury. Because of his current low white blood cell count, Joe is in a private room. Joan indicated he is sitting up, looks good. Goal is to get Joe some PT so that he can move around on his own and come home! It is possible that chemotherapy will be stopped. The mass on his lung has gone down a bit, but the tumor on the adrenal has gotten bigger. The Doctor feels the radiation has worked on the tumor in the lung area, but the chemo has not worked. Radiation only works on targeted areas. It can't be done randomly. This may not be a bad thing. Joe has had 2 chemo treatments and within days of the treatment, Joe ended up in the hospital. So maybe he can now spend time on getting stronger, start moving around and have a better quality of life. He looked great on the day of his last chemo treatment (Nov. 16the with the Dallas Cowboys hat), so maybe in two weeks he'll be much stronger and better! Elwood Strong!
Never, never, never give up. ~Winston Churchill
Wednesday, October 28, 2015
As of this morning, Joe is still in the hospital. Last week over a liter of fluid was removed from around the lung area. In addition, his white blood cells were extremely low. Since then, the fluid hasn't really built up and his white blood cells are increasing. He is on a hematology/oncology floor now and the level of service and the quality of care is definitely very good on this floor. He is getting up a few times a day to move around with the assistance of a physical therapist. He continues to have a feeding tube providing him with nutrients (via a pump). Today they are going to do a swallow test (with a type of dye). Would like to be able to start getting nutrients orally, without aspirating. Joe has had a few episodes where he was very anxious. He is now on a medication to help reduce the anxiety. At this time, he is very weak but also very alert mentally and wants to go home. The game plan is to move him to a rehab center (German Home, I think the Kindred Center in Dedham, or Jewish Rehab) depending upon availability, within a day or so. Expectation is he would only be there a few days, until they can get him stronger and able to walk around without assistance. This is the gist of what has been going on the past week. Hopefully, he will be home by this time next week, or sooner! Elwood Strong!
On Friday, October 16th Joe had his second chemotherapy treatment. It was a good day, As we got to the 10th floor to wait for treatment, there was a beautiful rainbow out side. You could see the right side and the left side, and the middle was over cast. It was a good sign. Met with Margaret (NP) prior to the treatment who was concerned about whether Joe was strong enough. We (Joan, Tom and myself) confirmed he was good. Actually the best he's looked in awhile. She was also concerned about his low sodium level. It was decided to start giving Joe sodium pills to increase the levels. She also indicated that some fluids should start to be introduced orally, slowly, with the hope of eventually moving away from the feeding tube. So, next up, chemo treatment. Joe had some milk, walked around, was reading the paper, etc. Went in for the treatment and everything was good. It's basically a 4 hour process: 3 hours of one chemo protocol and one hour of another. Everything went fine. Joe did not need any oxygen. Joan went to work. Tom and I took him home when the treatment was done. Everything was good....and so was Saturday and somewhat on Sunday.
On Monday, Joe wasn't able to keep things down. He was a bit tired during the day. On Tuesday, he was out and about with Joan and when they got home he was tired and in pain. He needed more pain meds. By Wednesday, he wasn't getting anything down and appeared disoriented. Jeff stopped by and indicated Joan should call 911. He was taken to Faulkner. They did a chest x-ray/CT scan (not sure which). Did show the mass did shrink somewhat, but he has some aspiration. He did not have any blood clot which is what they were checking. He was transferred to Brigham & Women's (Faulkner doesn't have a cancer floor). A decision was made to remove some of the fluid in his chest area. Jeff was there when they suctioned out the fluid (1+ liters) to reduce the aspiration. Joe had a restless nite. Today Dr. Jackman stopped by (Medical Oncologist). He is concerned about why the fluid is worsening: is it the cancer causing it, or something else? They can tell the mass on his lung/esophagus has gone down from the xray but not sure if it's due to the radiation or the chemo (or both). He is going to have CT done on his stomach to see if the tumor on the adrenal has been reduced. If so, it means the chemo is working. Another chest xray will be done as his breathing seems to be worse (he is on oxygen). They will try and mobilize his secretions with medicine and keep an eye out for infection. (His feeding tube appears to have small infection). Joe is not happy. He wants to be home. But need to get the fluid and breathing under control before that can happen. He's thinking he will come home on Friday. Let's hope so! I will update again this weekend as more info becomes available. Elwood Strong!
I have no idea how he was allowed out of the house with that hat on! I did let him ride in my car too! Ah yi yi!!
Woo hoo!!! Radiation is complete! Joe graduated from radiation treatments today. He is looking good....better than he has looked in awhile. He is also maintaining his weight around the 150 pound mark (+1 or 2 pounds). He has tomorrow off and then on Friday the chemo starts back up at Dana Farber. He has to be there at 8:45 am for the blood draw, then at 10:00 am meets with the NP and chemo starts at noon. Joan, Tommy and I will bring him in....Joan will probably leave for work before the chemo is done and then Tommy and I will bring him home. Things are very stable!! Elwood Strong!
We cannot direct the wind......but we can adjust the sails!