May 22, 2019 — Annual Pulmonology Exam — Mass seen on x-ray, Pulmonologist orders CT Scan
May 28, 2019 — Henry has blood in his sputum
May 29, 2019 — Pulmonologist does Lung and Lymph Node Biopsy & Thoracentesis takes 1+liters of fluid off his chest.
Jun 5, 2019 — NSCLC Adenocarcinoma diagnosis, not operable. Pulmonologist orders PET & Brain MRI
June 12, 2019 — PET & Brain MRI Scans
June 14, 2019 — Meet Oncologist. He says Stage 4 & metastasis in bones & brain. Wants to send some of the biopsies off for typing for markers. Average stage 4 NSCLC survives 9-12 months, a few more months with treatments, at his age and health. You are treatable, not curable.
June 22 — 1 month after mass spotted
July 5, 2019 — Pulmonology appointment, need another Thoracentesis next Wednesday
July 10, 2019 — Thoracentesis 1.8L taken off
July 11, 2019 — Oncology appointment. PD-L1 is 50%, therefore can take Keytruda! BRAF marker too, so can use a targeted therapy if immunotherapy doesn’t work.
July 18, 2019 — Keytruda #1, no immediate bad reaction.
July 22, 2019 — He feels weird, cant put finger on what it feels like. Very tired. 2 months after mass spotted.
July 26, 2019 — He is very tired and nauseated in the morning.
July 27, 2019 — He is very tired, doesn’t get out of his chair all day
July 28, 2019 — He is very tired, chair all day, nauseated in morning, can’t eat.
July 29, 2019 — Everything tastes salty, no interest in eating
July 30, 2019 –He is very short of breath, feels full of fluid
July 31, 2019 — Pulmonologist appointment & Thoracentesis remove 2L/5lbs of fluid
August 1, 2019 — He can breath a little better, feels a little better. Has a Boost/Ensure.
August 2, 2019 — 3 Boosts, drink supplements, and 5 very small meals
August 3, 2019 — It is hard for him to get a deep breath. having trouble getting the mucus up and out, chest hurts “I feel really shitty today”
August 6 — My encounter/conversation with the oncologist. Reassured me about working with us to make sure Henry felt good during the wedding.
August 8 — Keytruda #2, his blood pressure has dropped, oncologist says stop taking your (very small dose) blood pressure meds. Weight 198. He doesn’t feel well that night.
3 WEEKS OF KEYTRUDA
August 9 — He is very uncomfortable, feels fluid build up, can’t stand the thought of eating anything. He is starting to wheeze a lot, very noticeable.
August 10 — He has no energy, can’t do anything, sits and sleeps a lot. Still wheezing.
August 11 — He did not eat anything all day, is getting very depressed, is loosing sight of the light at the end of the tunnel. I need to keep boosting him up.
August 12 — He saw the pulmonologist, x-ray. Yes you have fluid, lets do the PleurX Catheter tomorrow. He had a little homemade custard and one Ritz cracker today.
August 13 — Thoracentesis removed 1.8 liters of fluid and installed PleurX Catheter. Also, prescribed 2 Antibiotics for possible COPD infections. They had trouble getting a vein today, he is dehydrated, so they gave him a liter of fluid today too. After the procedures he looked better. He felt better, maybe the morphine, he says. Chest sore and he is very tired. He can’t eat anything, he is a little nauseated .
August 14 — feels a little better, eats small breakfast lunch and dinner. Breathing is so much better this morning.
Aug 15 — Feeling better, may want me to drive him to the office for a little while. Does not feel like going out to lunch. By afternoon he is feeling “shitty” and having trouble breathing. We are going to drain the PleurX cath in his chest this evening. Drained catheter – 325ml! Our first time an dit went very well!!!
Aug 16 –Breathing a little better
Aug 17 — woke up feeling pretty good. He had cream of wheat for breakfast and a Boost for brunch. He thought he would feel like going out to lunch with his Saturday Lunch Group, but he wilted about 10:30. I offered to drive him but I think that is depressing for him. Then our neighbor, who is a member of his lunch bunch, offered to drive him. Perfect! They had a large group and I think he enjoyed it, a bowl of soup and a cup of fruit. He asked for a lamb popsicle when he came home. A visit with an old friend on the phone and he has had a big day. Drained PleurX Cath again – 400ml!
Aug 19 — right shoulder and arm bothering him again today. I took him to the officer a few minutes today. Friends came for a visit at noon (no food). Played Bridge with my parents for 1.5 hours this afternoon.came home for a nap. Has had 3 Boosts today. Sister-in-law brought BBQ, he had 4 bites and another Boost. Drained PleaurX Cath today — 350 ml.
Aug 20 — Dr takes Stitches out. Shoulder pain is probably referred pain from the cancer. Still having difficulty getting a deep breath.
Aug 21 — Pulmonology appointment to remove stitches from PleurX. Drained Catheter — 425ml and he didn’t feel like that was all but he thought that was enough. Used supplies from EdgePark that came in the mail. 500ml bottles, 10 bottles and prep kits, 20 day supply, $2300 — wow! Medicare paid, but … wow.
August 22 — Daughters told him that they are taking leaves of absence to come home for a while. He exploded and told them it was a terrible idea. I think I need to make a blog post about this subject. He sees it at the “buzzards circling”. They just want more quality family time. 3 months after mass spotted.
August 23 — LEAKING CATHETER — Girl friend saw a really funny movie the other day, so she invited a few of us to go see it with her. I needed funny and a few hours with girlfriends so we went. Our son was over visiting with his dad and Henry thought he might even go to lunch with his Friday Lunch Bunch. He is feeling a little better, maybe because we are two weeks out from a treatment. The movie was really laugh out loud funny. Five minutes from the end, Henry called and his port was leaking. So I raced home, calling the doctors office on the way…took off 550 ml of fluid…Still leaking around the catheter …to dr….maybe not healed enough when we took stitches out…it will stop… not much chance of infection because the catheter has a cuff just under the skin of antimicrobial material & there is pressure coming out not sucking in. OK. Antibiotic just in case.
August 24 — Feeling a little better-a friend came by to take him for a drive and lunch. They went to an outdoor cafe, Henry only had wine, but he enjoyed it. Started antibiotic today, must take with food and water. Drained 600 ml off tonight. Still leaking.
August 25 — Awakened early, not feeling well, wonders, “What happened to me in the last 8 hours?” He is so tired he can’t keep his eyes open, but can’t sleep. 4 bites of Cream of Wheat and 2 sips of Boost are breakfast, maybe that is enough for the antibiotic. Had a really bad gagging, coughing, sick to his stomach episode early this morning, maybe that takes it out of him. Drained 600 ml today.
August 26 — Henry feels like yesterday and today he has taken a step backwards. I had a meeting this morning for a couple of hours and came home to him in bed, feeling terrible and not able to catch his breath. Drain Catheter 800 ml. What is going on? It keeps getting more and more fluid. Why is he producing so much more fluid? The first 6 weeks — 1-2 L liquid; then 3 weeks — 2 L; then 2 weeks — 2 L; now every day — 400-800 ml. I used the larger (1L) bottle today and he finally felt like we got all of it. It will be interesting to see how much tomorrow.
August 27 — Good day, He ate all day, almost drove himself to the office for a while, but didn’t. Drained 600ml off today. 3.575 L this week, in just 7 days.
August 28 — CT Scan & Labs – Very tired today. Drained 300 ml. big decrease! His skin is breaking down where the tape is around the catheter dressing.
6 WEEKS OF KEYTRUDA
August 29 — Oncology appointment and Keytruda #3 Saw dr. CAT Scan: 1. doesn’t show any new cancer places 2. A little inflamed at primary tumor (that is expected) 3. upper back lobe might be collapsing a little from the inflammation. Not to worry about it as long as you arent having breathing trouble- he isn’t having any more trouble. Can be treated with a little radiation if needed. We will know more after 5th treatment, right after the wedding. Dr said maybe should try the appetite stimulant. It might give him more energy. Treatment is a non event! They are having a little trouble getting a vein, low volume & rolling. Weight 194 today. He didn’t feel like draining today. He is getting a little sad. He needs something to look positive. Came home and couldn’t get out of his chair for the rest of the night. Very very tired.
August 30 — Feels a little better today, ate his oatmeal with raisins for breakfast. Thought he might go to lunch with a friend, but when the time came he couldn’t do it. Drained 600 ml. Dressing was very wet, leakage from catheter continues.Had a hard time getting comfortable.
August 31 — Not doing well today. Couldn’t eat his oatmeal today, so had a Boost. A friend brought Spaldings donuts, and he couldn’t even eat one of those. Doesn’t feel well enough to drain this morning. Need to do it this evening. Drained 600 ml, dressing was very wet.
I don’t talk about me much, but all day today I have just wanted to cry. I’ll be ok, it is just a very down day.
September 1 — First day of dove season and he hasn’t left his chair. Had a really bad morning, very very tired and the thought of food makes him sick. I have a commitment at church, so asked our son to check on him. He was ok when I came home but very much wiped out. He had only had a Boost/Ensure. Drained 550 ml (2pm)before the bottle lost its vacuum. We are not getting all of it with the small bottles. I reordered and they only have the smaller ones. His fragile skin was stuck to the gauze so I put Neosporin on it before bandaged it all up.
September 2 — quiet day, feeling puny, Drained 550 ml (12pm). His cough is constant today, he is not able to clear mucus and is having trouble breathing.
September 3 — Happy 31st Anniversary! We were going to the office for a while and out to lunch. But he says that he is “…not doing well, today”. Dr. C, a family friend and the one who treated him when he had lung cancer last time, called today. They had a nice conversation and Dr C recommended that he take the appetite stimulant, saying that it would make him feel so much better. We drew off 925 ml of fluid (7 pm)and it knocked him on him bum. He was disoriented and woozy for a couple of hours, and couldn’t eat dinner. He thought he had taken his Advil before we started, but an hour or so later I found it on the counter. I think he does better when we drain in the morning.
September 4 — Henry started his appetite stimulant!!!! (and a 6 day steroid treatment). He ate a nice breakfast toast with honey, an egg right out of the nest and a piece of bacon. Said that he might even go to lunch with a friend. The friend came for an hour visit. Said he is having a good day and has nibbled all day! Our supplies still haven’t arrived, so I went to the drs office to get a bottle. Drained 650 ml. Henry had that same wiped out and disoriented feeling due to removing fluid. Also, he had so much dinner (a slider, lima beans, and an ice cream cone) that he needed a prilosec. Bad heartburn before bed.
September 5 — I think he might be feeling better as a response to his appetite stimulant and the steroid. His blood pressures is a little higher today, probably from the steroid. It is only a 6 day pack, so we will watch it this week. May skip draining today because no supplies, then go to dr in the morning to get one.
September 6 — Day 2 of appetite stimulant and he wakes up hungry and wants to go to Josies for breakfast! He ate 2 eggs, 2 pieces of bacon and 2 pieces of toast with butter and jelly! WOW! He said he wasn’t really hungry for all of it but he was able to eat it. He wants to eat because he doesn’t want to drop any more weight. Henry is going to have a friend pick him up to go to lunch today too! Uh-Oh! Drained 675 ml.There is a little blood in his PleurX line and when we drained it looked like the fluid was a little more orange than yellow, maybe contains a little blood. Then, out popped a piece of tissue, through the line. Dr.’s office asked Dr. C. and he said, “Sounds like his tumor is breaking down and if he has severe pain and/or breathing difficulties over the weekend to go to the emergency room.” What the heck does that mean?
September 7 — Henry doesn’t feel as good as he did yesterday, but still better than before! Didn’t want to go to his regular Saturday lunch, because he “didn’t have the energy to talk to people.” Drained 550 ml he is still feeling woozy after draining.
September 8 — Drained 675ml
September 9 — Ate a good breakfast, 3 bites shy of a whole cup of oatmeal with raisins and whole cream. Henrys shoulder has been hurting a lot more and he has started taking Advil 3-4 times a day. About 4:00 he hit the wall-dry hacking cough and fatigue, and woozy. Doesn’t feel like draining — maybe tonight. about 6 pm drained 674 ml.
September 10 — NOT A GOOD DAY Henry hasn’t eaten anything all day – one piece of bacon and a bite of sweet roll at 7 am, but that’s it. No Boost/Ensure…. He says he just cant eat anything. He has no energy and cant get a good breathe. Pain in his shoulder is waking him and he took Advil at 6 am and noon. Drained 675 ml.
September 11 — This was a little better day. Took off 650 ml fluid.
September 12 — He has a little more energy, encouraged me to go out and not stay home all day. Before he has always wanted be to stay close by. 650 ml fluid drained today.
September 13 — Henry went to lunch with a friend and ate prime rib. He was so happy that he could eat so much. He is a little weak this afternoon. Thinks maybe he did too much earlier. Drained 625 ml fluid off.
September 14 — Drove himself to lunch with a friend! Feeling pretty good. Not as much coughing… Drained 625 ml. Bought some crossword puzzle books for him. He hasn’t been able to concentrate too much before but I think he can now.
September 15 — Best Day in a long time!!! Shoulder not hurting too much, Coughing only when talking and after draining. He did need som Milk of Magnesia this morning, first time he has been stopped up but it worked within a few hours. Drained 650 ml. One of our PleurX bottles had no vacuum on it.
September 16 — Having a pretty good day. Drained 700 ml and one of the bottles didn’t have a vacuum on it.
.September 17 — OK day, Had 3 moles removed on face. 625 ml drawn off
September 18 — Terrible day, can’t get a deep breathe. Backslide, no energy, maybe from mole removals. 600 ml removed
September 19 — 11 am – Oncology appointment and Keytruda #4. Infusion went well. Out to lunch afterwards. Wants to go ahead and do the drain because he feels like he is getting tired. Drained 550 ml. A couple of hours earlier than yesterday. He feels better tonight than he has on past treatment nights.
9 WEEKS OF KEYTRUDA
September 20 — Still feeling pretty good this morning. He went to lunch with a bunch of friends. I think it wore him out. He came home and slept for and hour and a half. We drained 600 ml. Stopped before it got too low. Slept for 2 hours in the evening, up for a little football and then to bed early. Very tired tonight
September 21 — Still tired this morning but doesn’t feel bad. Ate a good breakfast. Little wheezy this morning. Says he is very tired. But, he also says that he knows that the treatment is working! Great attitude. Working on his crosswords, he has really enjoyed them. I am a Sudoku girl myself. Cloudy and with a chunk or two in it. Couldn’t stomach the thought of lunch so drank a Boost/Ensure and ate a banana. 725 ml drawn off. Terrible afternoon. So bored and so tired.
September 22 — 4 months after mass spotted
September 22 — Very tired, not eating anything. But our daughter and her fiancé are visiting and they have had a lot of success getting him to talk about when he was young. Telling stories … he loves an audience. Drained 600 ml.
September 23 — Can’t eat anything, the thought disturbs him. He has had one Boost/Ensure and coffee. Drained 4 hours early today so only got 475 ml. So very tired, did drive himself to the dentist and then to get his stitches out (squamous cells taken off his face a week ago).
September 24 — very tired, our daughter and her fiancé are here visiting before their wedding and I think they have kept his spirits up. Binging on Downton Abbey is helping too! Thank you Amazon Prime! Drained 600 ml.
September 25 — drained 725 ml off. So very tired and not at all hungry.
September 26 — Awoke too tired and hungry to eat. Drained 725 ml.
September 27 — Feeling ok, breathing shallow. 625 ml drawn off.
September 28 — Henry is not felling poorly but he is exhausted. He has slept all day. Drained 650 ml today.
September 29 — So tired, has felt ‘bad’ all day, taken several Aleve. Whimpers a lot. Drained 600 ml.
September 30 — Went to lunch with a friend, he said it was too much. But he needs to see something besides the 4 walls in this room and the tv. Only drained 400 ml! He has had bad shallow cough all day.
October 1 — Very tired, bored with this room, made him go to lunch – he ate an egg, a piece off toast and half a cup of coffee. Not eating anything. Drained 725 ml.
October 2 — So very tired. Got a little dizzy when he stood up a few times. Drained 700 ml.
October 3 — Drained 650 ml, we have slowed the drip down so that there is not a big ‘pinch’ at the end and it has made his evenings better.
October 4 — drained 675 ml. No energy, no appetite, getting depressed. Was worried about being left alone today.
October 5 — Worst day, he says. Just can’t do anything. I am assuming that this means that his immune system is in overdrive and eating up the cancer. 700 ml drained.
october 6 — Very tired and not eating. Lost a couple of pounds – 184 on home scale. Drained 350 ml, stopped with a very harsh “pinch”. And it bothered him all evening.
October 7 — Dr. H prescribed a new appetite stimulant, because the Dronabinol is not working very well. Start Megestrohl. Drained 500 ml, slight “pinch” at end but nothing like yesterday. Hope that this lower amount is a trend!
October 8 — Henry is not doing very well. I am worried. Drained 550 ml today.
October 9 — Henry slept in until 11 am this morning. He is so very tired and getting weaker and weaker. He started the new medicine this morning and a steroid to maybe give him some energy for the wedding. I hope that he will be able to walk S. down the aisle. Drained 600 ml today. He ate dinner, Wendy’s chili, and thought it tasted great and had a second helping!!! The Steroid and the new appetite stimulant must have gone to work immediately.
12 WEEKS OF KEYTRUDA
October 10 — Woke up feeling pretty good and wants eggs and bacon for breakfast. This is Rehearsal day, and he is planning to go to the rehearsal. 550 ml fluid drained.
October 11 — Wedding day! Girls spent the day at the Hilton getting ready. I joined them until 2:30, dropped our beautiful bride at the Apiary, came home and drained Henry (725 ml) and drove him to the wedding. He walked her down the aisle, held court for the reception and ate most of his dinner. He wasn’t able to stay for first dance, but he did well.
October 12 — We all went to Keeneland all day and he thought he might be able to go to the Post Races Dinner, but no energy after drawing off 600 ml. So he stayed home all day.
.October 13 — We had a Farewell Brunch for the kids here. He looked really good and held court in his chair for 4 hours. He was exhausted, but had a few quiches, a few donuts, some bacon and a mimosa — pretty good for a sick old man! Drew off 700 ml. He was exhausted and went to bed at 8. I think that the steroids that I gave him to get through the wedding were wearing off, down to just 2 tablets today. Only one tomorrow.
October 14 — I took Shelby & David to airport for Honeymoon, Henry is very cranky and teeth with me today. He says he needs really good news tomorrow so that he can move on and that he cant take it much longer, and that he is getting depressed. Only gets one steroid tablet today but he thinks that the new appetite meds might be helping, or it could just be the steroid making him hungrier. CT Scan and a trip to the office and Morgan Stanley, he stayed in the car wile I ran in for the mail and the deposits. Drained 625 ml today.
October 15 — Oncology appointment and Keytruda #5 (couldn’t have it). Today was a very scary day! He couldn’t get up and get going. He had two coughing gagging fits and was so weak that he couldn’t stand up. H wanted to go back to bed and the options I gave him were to go to the drs office early or the emergency room.H coughed and coughed a bit more and finally cleared his throat of mucus. When he did he immediately felt better and we went to the dr. His blood work showed that his hematocrit was only 8 and his iron was low. So Dr. H recommended transfusing 2 units of blood, so water some more blood tests (B12 & Folate) we went over to the hospital for the transfusion. Typing, crossing and transfusing took a mere 8 hours. 2 Units of Blood Transfusion. I have a summer cold and feel terrible, so sitting on a stiff stool all day was not great for me. (I came home and put my pjs on and watched part of a romcom with our daughter and went to bed. Didn’t sleep all night — coughed). Drained 850 ml.
Now lets not loose sight of the one great thing the dr said yesterday –-THE KEYTRUDA IS WORKING AND THE TUMOR IS SMALLER!
October 16 — I had a cold today and stayed in bed all day. He feels a little better and moved around a bit. 550 ml drained off.
October 17 — 625 ml drained. Had to have more bloodwork to test his iron. After his blood test we ate at First Watch with our daughter. He was glad to be out.
October 18 — 575 ml drained. Henry was extremely tired all day. And coughing up a lot of stuff.
October 19 — 750 ml drained. Still very tired and coughing.
October 20 — 625 ml drained. Tired and coughing. I have to keep a chair, cleared of all stuff so that he can sit down half way to the bedroom.
October 21 — 650 ml drained. Henry is not quite as tired today. He had a dermatology appointment today, just a mole check, so not too tiring (dropped at door and picked up helps!)
October 22 — drained 650 ml. 5 months after mass spotted
October 23 — drained 625 ml
October 25 — We started Keytruda up again, #5. We took two weeks off because of anemia, blood transfusion and iron infusion. He handled to Keytruda and iron very well. But is tired this afternoon. He had a good lunch, fried grits, sausage and biscuit with honey. Drained 750 ml off today.
October 26 — 650 ml drained. Very tired, maybe not as tired as he just can’t catch his breath. He gets exhausted walking across the room. Heavy breathing, when he moves around.
October 27 — drained 725 ml. He has a little better appetite, breakfast sounds really good.
October 28 — drained 700 ml. Shortness of breath so scary.
October 29 — drained 650 ml. Pulmonologist Appointment today. See Dr Journal Page. Basically not explanation for shortness of breath will need some more tests. Henry was very depressed after this visit because he felt like it was bad news to need more tests . Is something wrong with his heart? It has been very confusing — his tumor is shrinking but he feels worse.
October 30 — drained 700 ml,
October 31 — drained 600 ml. Deep fried shrimp for him tonight, he liked them.
November 1 — drained 675 ml. “I have not been able to get a good full breath at all today.” “My belly is so full and distended, it is hard and hurts.” He has been complaining of a full hard belly for a while. He complains because he has lost weight but still has this hard belly poking out.
November 2 —
November 3 — Spalding’s morning! Best doughnuts in the world — Henry loves them. He usually eats 4-5, this morning only one. Draine 725 ml.
November 4 — 10 am – CT w/contrast & 11 – echocardiogram. Shelby will take him, because I need to take my father to the oncologist. (My father has a consult with the Oncologist to decide how to attack his lung cancer. He will have a guided bronchoscopy by an interventional pulmonologist in 2 weeks.)
He managed to get to the tests but is not doing well this afternoon . His pulmonologist is out of town til thursday. They said if he gets too bad with the breathing to take him to the ER. Called the oncologist, they say he should see the pulmonologist, and are going to call his office to see if a PA can see him tomorrow, but that if his breathing gets too bad for him to go to the ER. I am tempted to just go to the ER and say “fix him”.
So by 4 he is throwing up the few sips of water I was able to get him to drink. After many phone calls to Pulmonologist’s and Oncologist’s office and talking to their wonderful nurses, they say “take him to the ER”. He won’t go. So we spend a scary evening and night of him throwing up every time he takes a sip of water and being miserable in between. If he is like this in the morning, I will take him to the ER. I have arranged for our some and daughter to come first thing in the morning to encourage such.
November 5 — He sleep pretty well from midnight on and felt like some tea around 9:30. Shortly after, he starts throwing up again and I say we are going to ER. Son and daughter come with us. We check in and since only one can come back, they go home to wait for word. First thing we learn is that he has pneumonia, fluid on his belly, fluid in the left side lung cavity and spots on his peritoneum. The pneumonia gets us checked into the hospital and a bunch of antibiotics flowing. The internist that checks us in says that the films from yesterday shows that the cancer has spread into the peritoneum, and maybe to the other lung; the Keytruda is not working and our oncologist’s partner will be coming by sometime tonight or in the morning to check in with us; and he will see us 7-7:30 tomorrow morning. We get up to our room and since it is election day, I leave my daughter in charge and go to vote. While I’m gone the oncologist’s nurse stops by and confirms the internist’s finds. Well hell! How can that be?
November 5-8 — We spend 3 nights in the Hospital, and everything has gone to hell. KEYTRUDA HAS STOPPED WORKING. Our oncologist’s partner doesn’t want to make a plan with us, however, when I tell her that his cancer has the BRAF marker. She is encouraging about starting something for that next week. She will talk to Dr H on Monday evening when he returns. It is a daily pill. Henry eats a little, cramps a little afterwards but doesn’t throw up. He gets lots of antibiotics and breathing treatments to open his airways.
November 9 — Henry feels like an invalid. So very weak. But, his O2 is still pretty good even when he is breathing heavy trying to get air and exhausted. He is worried about being alone, he is coughing a lot more than when in the hospital maybe the treatments helped. FOOD today: 1/2 C cream of wheat, 1/2 a small waffle (size of a piece of bread) 2 cups of coffee. Boost at noon. Every time he eats something his stomach cramps. Drained 675 ml.
November 10 — Drained 700 ml. Not getting out of his chair. I make a tray for his morning routine. Raised seats on all the toilets. Grab bars and seat in the shower. He feels like an invalid.
November 12 — Granddaughter C came over for a visit, they had a nice but quick visit.
November 13 — Henry has felt a little better the last couple of days, as he usually does as it gets closer to his next Keytruda infusion. We will not be having that infusion tomorrow. One thing that has helped is that he only walks twice a day(I think this is a mistake, but the way he wants to do it) I help him at the bedside in the morning to get dressed and help him walk to the den. In the chair in the den I bring a tray with all his toiletries and pills for the morning. He sits all day, we bring breakfast, lunch and dinner to him. Then in the evening, I walk him back to the bed. Today, I gave him a pedicure in his chair after breakfast, he loved it, and he really needed the exfoliation. I would like for him to get up once an hour, but he says it takes too much out of him. Drained 550 ml (used a small bottle, will need the larger one this afternoon).
November 14 — Dr appointment today. Will start BRAF targeted drug therapy when all the paperwork is done. The pharmacy called me because we don’t have prescription coverage and the drug is $21,000 per refill. She was not clear about how often it was refilled but said that the doctor had ordered 4 refills of the prescription. (I am thinking that that means per month and the refills go until after the next scans) That is $105,000! She said that she would send paperwork from Navartis who produces the drug and has a subsidy program. Unfortunately, we make over $100,000 and don’t qualify for the assistance. The girl at the pharmacist said that they write letters pleading the case of individuals and she would let me know how it goes and what the plan going forward is. Henry says that he is not going to buy it if we can’t get a discount — I say we are.
Our 9 year old grandson came over for a visit and Henry and L. had an amazing visit. They really connected and Henry gave him his Call of the Wild book that was given to him in 1948. L can’t wait to read it. So glad that they had a good visit!
November 15 — His friend BM came by offering to take Henry to their regular Friday Lunch, but Henry didn’t feel like going, so they sat in the den and talked for 3 hours. Near the end another friend N came by for a few minutes to pay off a football bet (really funny because Henry doesn’t bet – this is a friendly wager Henry won breakfast at a local restaurant).Sent girls to the basketball game because he wanted me to stay with him.
November 16 — Granddaughter’s 8th birthday. She came over to help bake her Explosion Cake, a six rainbow layer cake with a loose candy filling. She was so excited to cut into it and surprise her friends at her sleep over. While the cakes were cooking, Henry & I gave her gift to her. His friend F came over to watch the local college football game with him. They watched the first half together. While they watched I went to the little girls party at the local paint your own pottery studio (my Studio). They were all so cute and she was excited. After painting they were going home to for pizza, and I was to join them. He asked me to stay with him. His belly has really gotten swollen, and he doesn’t feel great. He says he is ready to have his belly drained, so I will call Monday morning.
November 17 — He is not well this morning. I need to stay close all day.
November 18 — I called first thing and we went to hospital to have his belly drained – Paracentesis took off a gallon of fluid. He was so happy to have it off and felt so much better. Drained 700 ml out of his chest so he lost 10 lbs of fluid today.
November 19 — He had terrible stomach pains at 4 am, went to bathroom and then threw up for 45 minutes, mostly dry heaves. He went back to sleep for a while. Only a piece of toast for breakfast. The Specialty pharmacy called to say that Novartis will not subsidize the medication. But because I had included a copy of his VA card, they will walk me through getting him a referral from the VA so that the medicine can be paid for by the VA.
November 20 — 21
November 22 — 6 months after mass spotted. The VA called to schedule an appointment with Henry in the Hemetology/Oncology department! And they will pay for his next line of treatment! We cant get an appointment until the 3rd of December, so we just wait. 🙁 But at least there is an affordable channel of treatment available to him. The specialty pharmacy associated with our oncology care was amazing in making this happen and making it easy. When I drained his Pleur-x and changed the bandages, it looks like his right abdomen is somewhat distended or maybe filling with fluid again. Drained 550 ml.
November 23 — Yesterday and today he has not been able to catch his breath or ‘get going’ as he says. He just has no energy. He is complaining about ‘fanny fatigue’ so I think I will get a gel seat from Bed Bath and Beyond to see if that will help. Drained 700ml.
November 24 — His stomach growls all the time, especially after he eats something.
November 25 — Just can’t seem to get going today.
November 26 — Felt good as he was getting up, but quickly became nauseated and barely made it to his chair in the den. He couldn’t stand the thought of food and his stomach hurts all the time. Called doctor’s office, they are scheduling another Paracentesis and calling in a pain medicine. Filled the pain medicine and he took one — WOW he can’t believe how good he feels.
November 27 — Paracentesis – drains 2.7 L. Girls take him. The pain medicine is amazing, he is like a new person. Wish we had thought to call this in earlier.
My dad has a CT guided lung biopsy, I took him. They didn’t have him urinate before he left surgery center (he has a very enlarged prostate) and he ended up in the ED 7:30-11:30 because he couldn’t urinate. Catheterized him. First nurse had never done one before and after two very painful and bloody attempts a urologist was called in and she put it right in.
November 28 — Happy Thanksgiving and Happy Birthday Henry. The pain medicine let him join the family for thanksgiving dinner. It is a good thing because if he couldn’t come we were going to have to find a way for him to not be alone on his birthday. He went to our son’s house, walked in on his own, and sat in a recliner all evening, in front of the fire. He was so happy and I think that I am going to plant him there once a week for an evening, at lest through the winter. He ate in the chair, but that was ok because it gave him a chance to take a nap too.
November 29 — Monthly pulmonology appointment. says to begin draining every other day, so we won’t drain today. Also, Henry tends to get a little short with me sometimes so when I dropped him off after the appointment, I told our daughter I was running away for a few hours. She laughed and said stay away all day – so I did. Sadly, it ws Black Friday and there were not a lot of easy options for things to do. So, I settled on a movie, fortunately it was about Fred Rogers because I needed to channel him as I sat in traffic for over an hour to get out of the mall/ movie theatre parking lot. Everything was fine when I got home. The girls went to a basketball game and we watched it on tv with some turkey hash. Henry is taking the pain medicine about 3 times a day. before he gets out of bed in the morning, after we drain around 2-4 and then before bed. It seems to be a good pattern for now.
November 30 — In state rivalry football game today so the kids all came over to watch and his best friend and his wife came over after the game for a few minutes. He was worn out and had to go to bed for a little while for a nap. We did his drain at 11:30 and got a liter of fluid. It will be interesting to see what happens in 2 more days.
December 1 — How did it get to be December already? He is so cranky today. So negative, I have to break the pattern by leaving the room to do laundry … Last night I gave him his pain pill and he refused to get up to go to bed, he needed just a minute. Well that minute turned into 4 am. I couldn’t go to bed, in case he needed something. It is different when I fall asleep in my chair for a couple of hour and having to settle in for the night – I couldn’t do it. I tried a couple of times to get him up, to no avail. So, I got no sleep last night. This morning I told him he can’t have his pill until he is in bed.
December 2 — Not a good morning. Stomach very sore and growling loudly. Awake 3-6, woke me up and i got his pain meds and slowly (1 hour) made it through taking the pain pill, putting on compression socks, putting in hearing aides, putting on glasses and watch, having a Ricola or two, trying to go to the bathroom (gas only) and walking to the den. 7 am in the den, where his coffee and thermos of coffee, some yogurt and his morning toilette tray is waiting, hot towel and all. Another half hour to make it through the routine that happens in his chair. 7:45 I need to do his drain before I go to get my hair cut. Number 2 daughter is getting up to fix his breakfast then go to a cycling class at 9 ( I told her to stay away and have coffee with a friend after class). Number one daughter will roll in at 9 for 2-3 hours, til we return.
December 3- First oncology appointment at VA. Went really well. They were so nice. The Fellow that spent most of the time with us was very good. He was a bit concerned as to whether or not Henry would be able to handle the side effects of the meds, but Henry wants to try the so the doc was supportive.
My dad was supposed to go to the urologist to have his Cath. removed tomorrow but has blood in his urine and is having pain with urination and a foul smell and cloudy urine. So the office worked hm in and took out the cath.
December 4-8– Waiting for the word that we can get his medicine from the VA.
December 9 — Call the VA to ask about the meds. They say come get them tomorrow afternoon between 2&4
December 10 — Pick up the meds and have a nice chat with the Pharmacist. She took 15-20 minutes to go over everything with me and answer questions.
December 11 — Started the BRAF MEDS first thing in the morning. Henry feels great! We have decided not to leave him alone at all, so the girls and I are working out a schedule to cover him and to get our Christmas shopping done.
My dad ended up in the ED at University hospital. I was there with him from 5:30 ti 1:30 am. UTI. Same incompetent nurse was taking care of him tonight.
December 12 — Still taking meds. All seems to be ok so far. The only difficulty is the timing of everything. Anti-nausea meds 30 minutes before chemo drugs, no food 1 hour after or 2 hours before the drugs and they have to be given 12 hours apart. I have a chart that we need to use to chart everything. The girls are a big help staying with him and getting meals. I am the only one that gives meds though, just to make sure we don’t miss anything, or over do anything. Still feels better that he has in a long time. I am worried that he is getting a false hope. I think that the anti-nausea meds are good for him.
December 20 — He has been feeling good. eating well and getting a little feisty. This morning however he had a nose bleed. It quit fairly quickly but I don’t remember the last time he had one.
December 22 — 7 months after mass spotted
He has been doing really well and feeling very good, he even considered going to lunch with a friend on Friday, but he didn’t in the end. But last night, 8 pm-ish, he had a fever of 100*F. He was chilling and shaking. I took him to bed, gave him his pain pill (hydrocodone, has some tylenol in it) and within 30 minutes or so the fever was down and he was able to go to sleep.He was OK through the night but about noon today he started again. Fever (just under 100*F), whole body and especially hands shaking, chilling. He is not able to “get enough air”. His O2 sat leaning back and chilling was 85-89. When he sat up and deep breathed for a while it was up to 91. He is having to breathe 35-40 breaths a minute. Threw up when gave him a little hot tea. Do I take him to the ED? St Joe or the VA?
December 23 — Well, last night was miserable. Henry took some Milk of Magnesia at 6 pm. I tried to get him to wait til morning, but he wouldn’t. So he was up all night and I had to change the sheets twice. He has slept off and on all day. He did have 2 visitors and was happy to see them for a short while. Fever starting again around 5 pm. All meds finally changed over from the Clinic to the VA except Prostate Cancer shot every 6 months and the Megestrohl for appetite stimulation!
Christmas Eve and Christmas were very good. He felt pretty good and we had a wonderful time. The kids cooked dinner both nights and we ate on our laps in the den, so that he could be part of the meal. Presents for the grandchildren on Christmas Eve; the girls had the exchange with us Christmas morning; then Christmas night our son and his family came over for dinner and presents with them.
December 26 — Today was another story. He has slept all day, eaten 3 bites of sweet roll, 2 bites of lamb and one glass of tea. He had a (medication) fever of 103, I gave him an extra ‘skinny pill’ (hydrocodone) and his fever started to come down a couple of hours later.
New development: He was too weak to stand and walk to the bathroom. Fortunately, I had purchased a wheelchair and he happy to have it to use. He used it all day. He had trouble getting to a standing position by himself.
New development: We have noticed that he is not coughing up mucus anymore! Is it the new inhalers or the BRAF meds? Both started about the same time.
I called the Palliative care office and they suggest that we come into the emergency room tomorrow morning so that they can check his blood levels. He doesn’t eat much, drink much, he is exhausted and can’t have a bowel movement without Milk of Magnesia every 3-4 days.
December 27 — VA Emergency Department visit first thing in the morning. They said he was dehydrated and maybe a small infection. Hematology/Oncology old him to stop Chemo until later, give his body a rest. Everyone who saw him said to drink water, drink more water, why aren’t you drinking water!!? It was a very nice experience! Everyone was nice, thorough, patient and efficient. Stayed 8 hours and got 2 L of fluid. They also ordered Miralax and it was waiting for us when we checked out. Then we went up to Outpatient Oxygen, they tested him and his O2 dropped as soon as he started walking. Within an hour of getting home the Oxygen company was dropping off a condenser and tanks. Put the condenser in the bedroom, a 25′ cord gets him from the bed to the toilet and back. Bottles in the den for going out and moving around.
My dad had his Brain MRI today. There is a shadow that they don’t like. So, he will have to have more tests to see if it is the cancer metastasized. He was to have his first radiation on Jan 7.
December 28 — Our oldest daughters birthday! 33 years old, can’t believe it. He has felt good today but is severely constipated so Milk of Magnesia this morning (half dose at 10 another half dose at 2:30). It has not worked yet (7pm). Using the oxygen when he stood and sat on the john did help him recover from the stress. He has had 3.5 glasses of water today, that is 3x as many as usual. He has tried to walk a few steps on his own – 4-5 steps from the wheelchair to toilet. Still needs help getting to a standing position. Finally, about 8 pm, he was able to go to the bathroom and evacuate his bowels! They told us to hold the BRAF Chemo for the weekend to give his body a break. He has felt great today! Not too tired or weak. He stayed up to 12am watching football and was feeling good.
New development: Henry’s left hip is bothering him and he is having difficulty lifting his left leg. He can move it some but cannot do a straight-leg leg lift. I need to lift it for him to cross his legs in bed and to get his foot onto the wheelchair foot rest.
December 29 — He feels great, no medicine, no side effects! Good breakfast.
December 31 — Kids over for dinner, nice evening Henny to bed at 9.
January 1, 2020 — Good day, Didn’t get up until 8:30
January 2 — Feeling good, likes the oxygen, it is really helping his transitions from chair to wheelchair to bed…
January 6 — Feeling good, Walking a little!!! It helps when he uses the oxygen and walker. Had a faulty regulator on his small o2 tank, they replaced it and all is well.
January 7 — HHK Echocardiogram
January 8 — Started his meds again
January 9 — Slept all day. no energy, not enough food or water.
January 10 — The last three days have been very difficult. He has become weaker and very tired. He had a bowel movement in the middle of the night and was not able to get totally cleaned up on his own. I had to help and noticed a rash on the top of his legs. I am worried about him getting an infection. He is embarrassed and fells terrible. I tell him not to worry, that it is all part of it and im not going anywhere. I would like to get someone in to help him with hygiene, and he says no. So, today I called the Palliative care office at the VA and they are going to see him on a “routine” follow-up and check him out. He went to bed today at 2pm and said that he was down for the count.
January 14 — Palliative care called tell them I don’t think Henry is doing well on the meds. Asked if we could cut them in half. YES and we need to discontinue the Tramafinib, it is causing problems with the output from his heart. They are going to have VA echo sent over so that someone can look at both echos together to make sure. I press a little that I want them to see him. The palliative care nurse ays that she will see him in clinic with no appointment. The real reason for the appointment is for him to be offered Extra Care from BCN (Hospice), it is a program that will help with bathing… and I want them to look at the rash on top of his legs.
January 17 — I can barely get him to the VA by 9 am. They wanted to do the consult on the phone but thank goodness I took him in. They took one look at him and suggested that we stop the meds for a little while, we can always restart. He was receptive to having an aid help with bathing. They couldn’t get a BP. and by the end of about 15 minutes they were talking about Hospice and no more meds. I asked for some fluids, so the sent us down to infusion.. He nearly passed out in his chair waiting for a bed, so I asked how long it would be. The got him right back. They couldn’t find a vein or get a BP. So they sent us in the bed over to the VA ER, across the hall. Used an ultrasound machine to get a vein and IV started, even so very difficult. Did a cardiogram and showed Atrial Flutter with twice as many beats in to as bottom of his heart. Put fluids in very slowly so as not to cause a coronary issue. His chest X-ray shows many clots, so they start him on blood thinner and admit him in the afternoon. Kids all come over to check in on him. He feels a little better with some fluid. They want us to spend the weekend and call Hospice to come to the house on Monday.
January 18 — Nicest Dr comes in to talk to us and sits down with us for 30 minutes. Makes us feel really good about Hospice decision. Says we can go home today or stay til monday. I want to stay til monday — what if something goes wrong over the weekend and I have to come back to ER with him. His arms are leaking fluid. He isn’t processing the fluids very well and may have some pneumonia.
January 20 — Holiday but Hospice comes to the hospital and the house and gets us all setted with the program. It is going to be a good thing. It is very hard knowing that there is no longer a chance for remission but we want him to be comfortable and have good quality of life through the end. Meeting with the BCN nurse Patty. Put Henry on Morphine instead of skinny pill (hydrocodone) because it will help open his lungs better.
January 21 — Meeting with the BCN Social Worker. Bill came by about the time we finished talking to her. Daddy has his brain tumor biopsy early this morning. Kay called to say that biopsy went well and he is in recovery. She called back 45 minutes later and said that a blood clot had been caused during the surgery and they were going to need to go back in to remove the clot. (Drs advise was actually to “Let him die because he was 87 and had had a good life” mom said no go get the clot. Thank goodness Bill was there, he gave me a big hug and I set off for the hospital. Out of surgery he was joking that “Just OK is not OK” like the commercial. Admitted to hospital.
January 22 — 8 months after mass spotted. He is loving the bed bath!
January 29 — Daddy moves to Cardinal Hill
February 7 — 3 weeks since VA admission, nervous about dehydration. Nurse Patty comes over. Cant really give him fluids because his body is not processing fluid well and his arms leaked last time. Anxiety and breathing worse. So she increased the morphine to every 4 hours and twice as much for 24 hours and added an anti anxiety pill. He is so much better and more relaxed. Getting up to the commode doesn’t take as much out of him now.
Feb 8-22 — He does fairly well, eats a little, drinks a little. Likes Jello and broth & cream soups, a little fruit, yogurt and cereal (Frosted Flakes or Raisin Bran or Cream of Wheat). He pees 2 times a day, about 8am & 8 pm. His bowels move once every 3-4 days when he takes Milk of Magnesia; he does not look forward to those days. I don’t leave at all on those days, because you never know when it will hit and may be more than once. I see my dad on what has become known as ‘No Poo Days’. I have amazing friends who started bringing us meals on Tuesdays and Fridays. It has been a God Send because it feeds me and whomever is around and I don’t have to worry about meals. Soup and Jello were requested to accompany every meal. So there has been a nice variety to give him. I have also shared with my mother and sister as they care for my father. I have also taken some soups to him and ground some of the veggies for him. Since I cant be with him I have started sending sugar free puddings and pies, cottage cheese, soufflé’s, buttermilk, frosted flakes, and raisens cut into thirds and plumped.
February 22 — 9 months after mass spotted
February 23