Month: August 2019

“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.

We have a treatment: Keytruda

July 11

PD-L1 is above 50% so he qualifies for KEYTRUDA!

He is also BRAF positive, so if the Keytruda doesn’t work he can try the targeted therapy for BRAF.

Keytruda is administered 30 minutes every three week for as long as the answer to both of these questions is YES. 1. Are you tolerating the treatment? Do you feel ok? and 2. Is the spread stopped or slowed? There will be a CT Scan at 6 and 12 weeks. The first may actually show some inflammation, the second should show a reduction in tumor size.

First infusion, Thursday July 18th. There was a thyroid test first, then the infusion. It was a non event. We went out to lunch afterwards and he ate half a hamburger. He tries to have wine with lunch and dinner, but rarely finishes it and it just doesn’t taste good. The first 3-4 days he hardly notices that he has had a treatment. He eats a little and goes to the office and out to breakfast occasionally with friends.

At day 3 he is very tired and doesn’t know what is wrong, but feels odd.

About day 7-8, Henry became really tired and listless. He was a little nauseated in the mornings. He had some confusion and a little short term memory issues. He has been taking a couple of Advil every day for general malaise. One day he said that everything tasted really salty, complains about everything being salty.

The last two weeks before his next treatment he was tired and hardly ate anything. He would force himself to eat some Cream of Wheat in the morning, a couple of Boosts and Ensures during the day and tea or broth at night. He also had his chest drained again. They took 2 L/5lbs out of his chest. When they do that the lung takes a little while to re-inflate but he really can breathe so much better.

Waiting and Wilting

June/July 2019

As we sit and wait for the results so that we can start a treatment, Henry begins to wilt. He retired 20 years ago but continued to go to the office everyday until this summer. Some days he doesn’t have enough energy to do that. The other day he had to get back in bed for 20 minutes after his shower, to catch his breath. His O2 sats stays above 92, but I think he deep breathe before he takes it.

He coughs large amounts of mucus. How much of the coughing and fatigue is related to the COPD? Doctors won’t say. He was given a long term inhaler and a rescue inhaler. WARNING: the long term inhaler is $450. He thinks they help a little.

Henry is not hungry. He has lost 20 pounds since January and I can’t get him to eat very much. I did bring home some Boosts and Ensures to try to up his calories and protein. He, of course, wouldn’t try one until the doctor suggested it. I had to be the one to ask about eating.

His decline has been so noticeable, I am very worried. The only positive is that he is very optimistic about getting some kind of treatment that may work.

The oncologist and no treatment yet, more tests first

June 14, 2019

Dr. H came very highly recommended. He was the hand picked replacement for head of oncology in the Clinic where Henry is being treated. One of our very best friends sees him for follow up to her breast cancer. I like him and trust him.

After a very brief introduction he gave us the news that knocked us off our feet: Stage 4 lung cancer, it has spread to his bones (rt hip) and there is a spot on his brain, NSCLC Adenocarcinoma, in operable and incurable but treatable. 9-12 months with no treatment. SHIT! no other way to say it… SHIT! SHIT! SHHIT! Add a few months with treatment. I think that we were both surprised. I had been scouring the internet for articles about NSCLC Adenocarcinoma and felt that it would be maybe stage 3. Shoot, he didn’t even have symptoms until a few months ago.

As we walk out of the doctor’s office and down the steps to the car he says, “Well, I guess we need to with your life into shape.” Worrying about me when he has just gotten this awful news. The sweetest man. The next day he wanted to go to his parents graves. But that is another post.

So, now what? Well, yes , more tests and 10 days for them to get back. These will tell us if there is a targeted treatment, immunotherapy treatment or if we go with traditional Chemo. Now our appointment was on Friday and he said 10 days and that if we had not heard from them by Monday a week, we should call his office and S would get us in the office for the results. I called on the appointed Monday and was told that the tests take at least 10 business days – 2 weeks. And the biopsied samples we not sent until the Monday after our appointment. Add one more week. WAIT WAIT WAIT

Tests still not back in another week, but will be on July 10th and we can see the doctor on the 11th, seven weeks after his annual pulmonology appointment. I keep hearing that the cancer doubles in 6 months echos in my head … we are 2 more months along and his cancer is 33% bigger … scary. Let’s get some medicine in him. I see him getting weaker, every day.

IN the mean time, he coughs more, the fluid builds up quicker and 6 weeks after his biopsy he had 2 liters drawn off, second Thoracentesis.

We both are in limbo. Can’t think about anything longterm. What do we do about the wedding? What do I do about a girls trip planned for Sep/Oct? When will we know something?

We tell people, well I text all our friends, because I don’t want to have to talk about it. He doesn’t want anyone to know that it is stage 4. He doesn’t want people to see him differently. I think he needs to hold onto the hope that a treatment plan provides.

The text: Just back from doctor.  Good news. Henry is a candidate for immunotherapy and the drug Keytruda. It encourages your own immune system to go into overdrive and for your T-cells to attack the cancer. It can actually cause the tumor to shrink. It is a 30 minute IV infusion once every three weeks with very few side effects. We will know in 12 weeks if it is working ( it will be). If not, we try something else. 

Web research reveals: Immunotherapy drug best for Henry’s type of cancer? Keytruda! It has just had big trials reported at a convention in Chicago. It will be the number one selling drug in the world by 2024 and is some kind of miracle drug. Praying that Henry has the PD-L1 marker!!!

First PET Scan and Brain MRI

June 12, 2019

For the patient: The scans were easy and cold. When you go for these, wear warm clothing, sweat clothes or similar to keep from having to strip, no metal.

For the driver: It takes 1 1/2 – 2 hours — bring a book, or in my case a Sudoku puzzle book. I ended up talking to Carol’s family, she was having scans for colon cancer. We compared short stories, comforted one another and each added the other to our prayer lists.

Results next week.

Who do you tell? and What do you tell them?

June 2019

Henry didn’t want to tell anyone. Well that is just not realistic. We have 3 children and my parents and lots of friends that love him. If you don’t put out a tale people will speculate and that will always be worse. Henry really didn’t want to tell anyone but he didn’t mind me telling. As long as I told the story he dictated. That’s fair.

I have lung cancer. NSCLC Adenocarcinoma. It is not operable or curable, but treatable. I’m getting more tests and will know what the treatment is soon.

I called our son, here in town; our girls, in Colorado; and all of our best friends, local and away. I didn’t want them to hear it ‘on the street’. I told them to give him a call, when they wanted. That worked really well. He didn’t have to make the explanation and they could just chat about how unfair to get it again and in generalities about the cancer and treatments. He was very optimistic!

Now we wait for another 10 days. The waiting is so very very hard. I found that I couldn’t plan anything. I couldn’t think about the coming holidays or our daughter’s wedding in October. But I could hang my hat on the news to come on June 14th. Then we would make a plan and get on with kicking yet another cancer to the curb, we had successfully done it twice before. Once with lung cancer and then again with prostate cancer.

NSCLC Adenocarcinoma

June5, 2019

Dr. C. gave us the news. NSCLC — non-small cell lung cancer — ok, not great but better than small cell. Adenocarcinoma, same kind as before, but not a recurrence. This one is all new. Henry often says, “No one should have lung cancer twice.” I agree.

How long has he had it?

A mass this size has been growing for quite some time. The doctor said that cancer cells double in mass every 6 months, so it has been there a while. The edges are very fuzzy, not like before when it looked like Henry had inhaled a walnut. There was no x-ray last year, and the one from the year before, might have a little spot. He showed us the x-rays. The mass looks to me to be about the size of my fist and is located near his sternum in the right lung.

So, what do we do about it?

Because it is centrally located, it is not operable — too many vital pieces too close to make it safe. So we get more tests and will meet an oncologist in . . . you guessed it – in a week to 10 days.

Biopsies and fluid drain

May 29, 2019

A week of waiting and finally the day arrived for the biopsies. I procedure was fairly easy from a patients perspective and only takes about 45 minutes.

The doctor talked to us afterwards: he removed a little more than a liter of fluid from around his lungs; he took many scrapings of the mass; biopsied the lymph node and said that we would see him in a week for the results.

Really? A week. Henry pushed the doctor and he said, “If I had to guess, yes I would say that it is cancer. But let’s wait and see.” We trundled on home to wait another week. Henry’s cough is getting worse and because of the biopsies and irritation to the lining of his lungs, his mucus is very bloody now.

The waiting is the worst. We decided not to tell anyone what was going on because…. well we really didn’t know anything. I did take the time to start making a list of questions. I have found a pencil and notepad in my hand at the dr’s office to be very comforting. And the list comes in handy because when faced with difficult news my brain doesn’t always function at its best.