November 2019 – His Cancer, Our Journey

People are so nice!

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, %#!$&!

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.