People are so nice!

People are good!

People are so good! I had an experience today that cause my eyes to leak and my voice to disappear.

As you are aware, my husband’s lung cancer has been a bit of a journey. Eating has been one of our biggest struggles; so, when I find something that he likes, I buy all of it. Unfortunately, his tastes change and I am left with a case of Vienna Sausages, 6 pints of Graeter’s Peach ice cream, 2 boxes of Fig Newtons… I do this because it seems like I go to the grocery every day and if I have something he likes on hand, maybe I won’t have to go EVERY DAY.

One of the things that Henry has teased me about for 30 years is that I like ‘sticks and twigs bread’, course, whole grain bread. We have laughed about it for years. Until, last week when our youngest daughter made him a piece of toast with jelly on some Ezekiel Bread — and he loved it! Amazing! After all these years of teasing. Well, pretty soon that loaf was gone and I headed out to the grocery. Trader Joe’s this time. I was checking out and the young lady at the register asked about the bread I was buying,”Is it gluten free or something special?” So I told her that my husband has lung cancer and has funny cravings ; recently, he has wanted ‘sticks and twigs bread’. And these days he gets anything he wants.

She finished my order and walked over to the floral display. She picked up a dozen red roses (Henry’s favorite color) and handed them to me saying, “We would love for your husband to have these flowers and I hope that he feels better soon.” I became choked up and my eyes began leaking; I could only mouth “thank you” as I picked up my grocery bag and headed to the car.

I sat in the car and cried for a while. I was so moved by this simple act. It was such a sweet gesture and Henry choked up too when I walked in with a gift of flowers from the grocery store clerk.

People are good!

Well, %#!$&!

Keytruda stopped working!

After waiting and praying and waiting and waiting and being on Keytruda for 12 week, we were told that the tumor was smaller, so the Keytruda was working. WoooHooo! It has all been worth it! We know that we are not talking about a cure, but postponing it a few years would be nice. However, the very day that we get the good news Henry was so weak and his blood showed that he was anemic that we had to skip his 5th treatment and have a transfusion instead. So we skipped a treatment and got 2 units of blood. The transfusion quickly helped a little with his color and energy. An iron treatment each of the next two weeks was supposed to help too. However, he has felt worse every day since we found out that he is ‘getting better’. After a couple of weeks and some blood and iron, they say he is ready for treatment #5; even though he still can’t breathe or eat or walk more than 25 yard without sitting for a rest. Treatment always takes a lot out of him, and he seems to be going down fast.

There was a pulmonologist monthly check up scheduled right before his treatment and he was flummoxed as to why Henry wasn’t able to get a deep breath. So he scheduled some tests….and the day after the tests I took him to the ER because he couldn’t keep water down.

And now, after spending 4 days in the hospital, we find out that not only has the Keytruda stopped working but the tumors have spread to the peritoneum and maybe the other lung. So, with in 3 weeks we go from tumor shrinking 30% & Keytruda working to tumor growing/spreading & Keytruda not working. We are all a little numb and he thinks that this is the end. And no one at the hospital could tell us anything good. Oh did I mention that when I took him to the hospital that both his oncologist and pulmonologist were out of town; our family doctor, too.

Home on Friday and our appointment with the oncologist is not until Thursday. The waiting is unbearable. Meanwhile, he has trouble eating, his belly is so swollen that I think it is squeezing his stomach and lungs to the point of extreme discomfort. His stomach gurgles so loudly that you can hear it across the room and as soon as he eats anything he gets heartburn. So munching Tums, followed by a Nexium. He can’s stand long enough to do his morning toilet, so I bring his inhaler toothbrush, toothpaste, warm washcloth, dry hand towel, hairbrush, cup of water and a rinse bowl.

The turn-around time line:

Oct 14 — 12 week CT

Oct 15 — Oncologist says CT shows tumor shrinking by 30%, but you don’t look good and your bloodwork says you are anemic. So to hospital for 2 units of blood transfusion. He feels a little better, and has some color in his cheeks.

Oct 24 — 1st iron treatment

Oct 30 — Pulmonology appointment — Dr doesn’t know why he feels so bad and can’t breathe, so orders CT and echocardiogram for Nov 4

Oct 31 — 2nd iron treatment and 5th Keytruda infusion. He feels terrible all weekend and can’t breathe or clear mucus.

Nov 4 — Has the two tests and goes to breakfast afterwards. But by afternoon he can’t keep even water down.

Nov 5 — I insist on taking him to the ER. They do a CT of belly, an x-ray and a few other tests and then tell us that the cancer has spread and the Keytruda isn’t working any more.

Nov 14 — Oncology appointment

Needs company, but can’t handle company.

Henry is bored…… He watches tv all day, isn’t able to concentrate on reading, can’t really go anywhere (for long). And to top it all off, it is an election year! Oh boy, political commercials! They get him all wound up and he gets on his soap box. We have binged watched so many shows, from really good ones to some really terrible ones. He hates talking on the phone, so doesn’t really talk much when people call. They call to ask him to lunch, and he would love to do that but just can’t muster that much energy, for that long. I think people don’t understand how limited his abilities are.

Henry is an extrovert, he needs people, and I don’t know how to orchestrate it. His energy is best in the morning and I have suggested to a few friends that they call and drop by for 30 minutes between 10 & 12. So, I hope that some will take him up on it. I think people are somewhat afraid of coming to the house, for fear of being a bother; but, that is about the only way that he can see anyone.

Lately, we have a doctors appointment one or two days a week, so it is hard to plan.

When someone does come by, they often stay too long. Thirty minutes is about his limit. I’m sure that people think that 30 minutes is not worth the drive over.

Keep a Journal!

Logging might be the most important tool in your bag, the Keytruda is in the doctor’s bag. I took extensive notes at the first few doctor visits, both pulmonology and oncology. They were very helpful in remembering and talking about his cancer. I was able to hear and take notes while Henry listened and processed emotionally. He would be thinking of the next important question to ask and I was writing down what the doctor said. I also took a list of questions to all of those visits. Once I started writing this blog and the treatment started, I didn’t keep the notes more than a day or so. That was a mistake. So I think I am going to have to add a new page to document doctor visits, hospital visits and treatments.

We remember things differently, and he gets really mad at me sometimes for disagreeing with him, so I just agree and go on. So a bit of advise to anyone going through this – get a journal and write everything down.

Keytruda is working!

OK. So the best news in the world is that the immunotherapy is working! His tumor is 30% smaller than it was 6 weeks ago, the doctor won’t say what size it is relative to the size when we started treatment. Forgive me if i’m not bouncing off the walls, like I thought I would be, but… 

When we went in for the 5th treatment and to get the report for the CT Scan, we got the news that the treatment is working and the tumor is smaller — BUT — Henry is anemic and can’t get the 5th treatment for a couple of weeks. AND — We need to go straight over to the hospital for two units of blood, more blood tests over the next few days and an iron treatment each fo the next two weeks. Whew! So much, and he is more fatigued, having more difficulty breathing, can’t clear the mucus out of his chest and his feet are swelling.

The blood transfusion helped immediately, gave him color and a little energy. However, he is so weak that he must stop once or twice on his way from the bedroom to the kitchen to rest. There are chairs strategically placed so that he can catch his breath. He doesn’t leave his chair all day, for anything. We bring him his coffee, ice tea, food, if he will eat, meds …..

He was able to take his Keytruda and first iron treatment last week. I want to be excited and positive, but just can’t, yet.

It is so frustrating and sad to hear him wheezing, coughing and gasping for breath. He has started waking up at night 2-3 times with mucus blocking his airways. I’m scared and worried and frustrated. We have a pulmonology appointment day after tomorrow. Maybe we can get some answers.

To top it all off my father has just been diagnosed with lung cancer. I feel numb. I take him next week for a biopsy.

“I’m afraid I may never see anything but these 4 walls and the tv, ever again.”

The first 12 weeks of Keytruda treatment is so very frustrating. You must take the treatment every week, deal with the side effects, drain fluid out of your lungs, try to work up the enthusiasm to consumers enough calories to keep from blowing away, sit alone or with a spouse for hours, days and weeks on end, cough and cough and wait. Your power of concentration is depleted along with your appetite. Your energy level plummets, taking a shower requires a nap afterwards and walking across the room requires a sit down. Someone must fix your meals, drive you to appointments, keep track of your appointments and important treatment details. It becomes hard t see the light at the end of the tunnel.

The longer you sit, the weaker you get; but, you cannot make yourself do anything. 12 more days until we get the news that the treatment is working and we can begin to plan for real.

Marijuana, man-made but works! For a while.

Eating has been one of our biggest struggles for Henry, just ahead of fatigue. Nothing sounds good, nothing tastes good and he just can’t eat very much. So a friend suggested that I get someone in Colorado to send some edible pot to us. We are a very straight and narrow family (read: old, old-fashioned boring),and Henry would never agree.

I asked his oncologist for help with this, he was happy to order the stimulant, encouraged Henry to takeout the next time we were in the office. Henry is hard headed, He figured that he could make himself eat enough to get by. Dr. C. ordered it anyway to have it unhand when Henry wanted it. It is a very expensive prescription. The pharmacy called before filling it to make sure we wanted to pay $250 for it. Henry said “Absolutely not!” I cajoled, complained and encouraged him to take it. Then while chatting with a good friend I mentioned the eating issue. She marched right next door to a lifelong friend of ours, who is a retired oncologist and the past head of the department where Henry is being treated. Dr. C. immediately called Henry, chatted him up and then gently suggested that he should try the appetite stimulant. He started the next morning! Thank you John! It has been a game changer. We have to use all avenues we can to get these guys well.

I looked up the prescribed drug — Dronabinol (Marinol) a man-made cannabis! How funny is that. It comes with a 6 day very low dose steroid (so it will not interfere with the Keytruda) and the combination has been amazing. Immediately he had more energy. But now 10 days later, he has been out to breakfast or lunch several days with friends, he even drove himself one day. I don’t know if it is the stimulant or the Keytruda working but whatever it is I am grateful! He feels better and, I think, that is great for his mental state which I believe effects his physical state.

We are going to master this bugger, one way or another. And man-made Mary Jane has been a big help.

So it only worked for a little while and in hind-sight maybe it was the steroid that was taken for a week as he began the Dronabinol. After a few weeks his appetite went away and we started another appetite stimulant, Megestrol Acetate. It has actually worked much better and he actually likes the taste of things now.

“I can’t eat anything, nothing sounds good.”

Food and meals have become a chore. I have tried all of his favorites, to no avail. And when I do find something he likes, he only eats a 1/4 portion and may not want it again for days/weeks. I throw away or freeze many things.

Greater’s Peach Ice Cream tasted good in June. I bought a dozen pints, I still have most of them. As soon as I bought them, it didn’t sound good anymore. So, I buy small quantities and go back often to the grocery. An apple sounds good, but only a little less than half an apple once a week. A flank steak sounds good, but not the day that he asks or that I cook it; three days later and only 3 thin slices.

So, what works? Well, on the way to the grocery, I ask if there is anything I can get for him. Usually, the answer is “No”. But the other day he said that I might laugh, but do they still make Vienna Sausages? As a matter of fact, they do. When I got home he ate a whole can! WoooHooo! Something tastes good. So those have made it to the new snack area in the kitchen.

Things that taste good!

Things with sugar in them are the winners. Fig Newtons, Oreos, applesauce with cinnamon and sugar, not the unsweetened version, mini Reeces Cups, Nutri-Grain Bars, bananas and toast with honey.

Meat in small quantities. Half a slider or a few slices of beef; not really interested in chicken…Tuna salad tasted good, for a while, but not right now.

Pasta with butter, no sauce, and a tiny bit of parmesan cheese.

Cereal, I think because it is easy, sweet and has milk on it.

Nuts — 1-2 peanut butter crackers, 3-4 macadamia nuts or a pecan, roasted not salted.

He still drinks a glass of milk sometimes,

And the biggest surprise of all — a Quarter Pounder from McDonalds! We took a drive in the country this morning, and on the way home we drove past a McDonalds. It was 11:45, so I asked if he wanted one. YES, that sounds good. He ate about 6 small bites, but at least it tasted good and he ate, about 1/3 of the burger.

Things that don’t sound good any more.

Salt. Everything seems to taste salty and terrible if salted. No bacon, it used to be a favorite breakfast food, but no more. Eggs don’t even sound good. He used to love egg salad. Veggies, salad, mashed potatoes; no, no, no. He used to be a big cheese nibbler, not any more.

I’ve decided that whatever he wants, he gets.

I do push two things: Boost/Ensure high protein, low sugar drinks & water or water flavored with non-caffeine powdered flavors. Henry has never been a water drinker, “fish do dirty things in it”. So, I use Crystal Light (decaf lemon) Tea powder, Nuun tablets (1/4-1/2 tablet per glass of water) and Cool-Aid liquid squeeze bottles of flavor. He seems to like citrus and likes it very weak, not a strong flavor. And fortunately, I was given a countertop ‘Sonic Ice’ ice machine last year for my birthday. He teased me unmercifully for my addiction to ‘Sonic ice’. Now he is too. Even though he doesn’t eat, he does like crunching the ice. (FYI Sonic sells it by the bag.)

We no longer think about 3 meals a day, it is more like small (tiny) nibbles all day long. We do try to start the day with Cream of Wheat or toast and honey, followed by a Boost/Ensure. He sleeps, snacks, watched 24 hour news, and work (plays) on the iPad for a few hours. I offer lunch, a bit of meat, chicken/egg/tuna salad or anything. He usually says, ‘no, just bring a Boost/Ensure’. An apple sauce, a few sporting events and a peanut butter cracker or Fig Newton. A couple of Advil helps about 5-6:00 when he has his afternoon sinking spell. A Prilosec too. He isn’t eating anything to give him indigestion; but, I think he is just looking for something to make him feel better. Dinner-time, nothing sounds good. Half a slider, pasta, cereal, Boost/Ensure? Down the stretch, whew almost there, a struggle to get to bedtime. Jeopardy, drain chest port and a few episodes of the current series we are watching.

He has lost 20-25 pound since December. I, on the other hand, have gained 10 pounds since May when he was diagnosed. Trying to find what he wants to eat, many left-overs all around, sugar everywhere and I’m done for. So, three days ago, I started back to my healthy and hopefully more disciplined routine. We will see.

The gift of telling his friends for him

Telling his/our friends is a small gift I can give him. It frees him from the minutia of his health story, and they can just talk about fishing, friends and politics. The friends are so glad that I called them. They are worried, but I can answer their questions about treatments, how often, how long, prognosis, side-effects…..so that when he talks to them they can just visit, tell stories and reminisce .

For the most part I stick to the party line “Incurable, inoperable, treatable”, immunotherapy… but with his 2 very best lifetime friend, (our closest couple friends) I spilled the whole story. I thought they should know how little time he might have and how serious it is, because the sweetened up texts that he dictated in the beginning sounded too positive. They too have been grateful to know and have been so kind and have made efforts to see him more. I don’t know that he really appreciates the effort or even recognizes it. He is so focused on trying to feel better.

I called a very dear, relatively new friend (15 years), younger (30 years younger), in Oregon a few nights ago. He told me that he had been afraid to answer the phone. Henry usually calls him; I text and send a Christmas Card. He was afraid something more serious had happened, he was relieved that it was just cancer and not a funeral. He was down on himself for not communicating more frequently, but that isn’t fair. We all get busy on our hamster wheels of life and get distracted by the little things. This friend called the next day and they had a great visit!

I went to the Colorado Rocky Mountains to visit our girls and tell them about their dad and while I was there he asked me to call on all of our friends and tell them what was going on with him. YUK! Not something I really wanted to do and it is far more difficult in person. But, I did it and several of them have called and will check in periodically. He really likes to hear from them.

One of them will go home to Texas at the end of the summer, has been sending photos of her grandson on an amazing 400 mile fishing trip along the Texas coast. Henry enjoyed watching that trip on his phone and talking about fishing trips he has taken.

Driving through a friend’s sunflower patch, drinking a glass of wine on a patio, walking around the new Law School, visiting with a friend who brings a milk shake, a short drive in the country the farm, it’s only 30-60 minutes, but is gets him out and in contact with his friends. He has always cherished his friendships and I think he needs them now. He can only manage it 1-2 times a week. So, when someone asks what they can do, I say call him every other week, stop by for a 15 minute visit (call him first), think of a short driving activity or see if he wants to go to breakfast or lunch. He may not go with you but keep asking.

I am always on the look out for anything I can do to make this journey easier for him. I think this is a big one.

Telling the kids

July 2019

How do you tell your children that their father is dying?

Henry, an only child, lost his father when he was just 30, right before our son was born. His mother died, at 92, when he was 60. Both of my parents are still living, healthy and in their 80s.

Just to keep things straight, we are a yours, mine and ours family. But we don’t make step- or half- distinctions. We are all just family. Our son is 48, married with 2 children living in our hometown. Our oldest daughter is 32 and lives in the Rocky Mountains with her sister and fiancé . She is getting married in October, her other father lives about 80 miles from where we live. Our youngest daughter is 28, and lives in the Rocky Mountains with her sister.

I am very close to our son and we depend on each other for lots of support in so many ways. So, when the diagnosis came in, he was my first call and I told him everything. He lost his mother a few days before his wedding and I know there are many times that he wishes that he just had a little more time with her. I thought that he deserved to know everything going on with his dad. They have several projects that they are working on together, so they do spend time together. One of his first thoughts was to take a trip a Thanksgiving together, to help his dad fulfill a promise to the girls to take them to Hawaii or Scotland. The thought was well meaning and a great idea. I too had had the same thought. But Henry just can’t think about travel when he feels so bad. Hopefully he will get a remission and we can all take a trip together.

The girls on the other hand are 1200 miles away. Henry wanted me to stick to the party line with them until we knew about a treatment. So, I did. I hated it but, maybe it was for the best. So when he got the treatment plan. I told them about the Keytruda and a couple of days after his treatment, I flew to the mountains to talk to them. It was the hardest few days of my life. I let the first day be about being together. Then after her sister went to work, I took our youngest out for brunch and told her the whole story. We both cried a lot and her first instinct was to come home. I asked her to table that so we can think about it and get more information. We sat for a long time at brunch, shared a really good piece of French Toast and talked about Dad.

After spending a day busying around, running errands and avoiding the topic, we took her sister and her fiancé out to dinner at a restaurant owned by a chef friend of ours. I told them at dinner and they said that from the first time that I mentioned that he was sick they started talking about coming home. He can transfer to a branch of his work here, and she is brilliant, she will find something. They are getting married here so, they will come back here after the honeymoon. Again, I said let’s don’t make decisions too quickly.

All of their friends who have lost parents have said that the one thing that they regret is that they didn’t take a little extra time, especially after they knew that they were sick. And my daughter-in-law suggested that our son start counseling now. He went to counseling after his mother died and it was very helpful.

My mother had a severe illness at the same time that Henry had his first lung cancer. She had an infection that put her in a coma for a while, caused seizures and strokes, and eventually caused the amputation of one leg below the knee, the other foot at midmetatarsal and about half of all of her fingers. I lived next door with young children, so I could help out and not abandon my family too often. It was a very difficult time. They were about to transfer my mother to a rehabilitation hospital when Henry was scheduled for his surgery. I went to her doctor and asked if there was any way they could keep her until after Henry’s surgery, I was not sure I could manage 2 hospitals for a week. They put her into the Hospice wing and let her mend a bit more before going to rehab. Wouldn’t happen today. But I am very grateful that they were able to help me.

I have talked to several friends who have lost their parents. I am very much in the minority, most have lost one or both parents. Four of my closest friends have lost parents: three of them lived several states away from their parents; one lived next door to hers. The three that lived away had children in college, husbands well established, the time to devote to their mothers and the means to go back and forth often. They both have siblings, but it seemed that they were the ones who took on the caregiver role. Interestingly, the three that traveled to give care all wished for more time; the one who lived next door said that the time she wanted was before they got sick not the daily watching them deteriorate.

I spend quality time with my parents often. And, they are pretty healthy, so I don’t know how I am going to feel when they become ill.

Talking to family about health is so difficult. But talking is important and in person for the first conversation was important for me. There will be many more discussions to come, but the toughest one is begun.