These Trying Times

We hope you are all doing well considering the circumstances. Who would have guessed last Thanksgiving and Christmas that we would be in this mess mere months later? We finally ventured out last Tuesday after 14 days of self-isolation. We had to, we were out of a number of things, not the least of which was ice cream! (I know, I know, first world problems...) While P and I are retired and have no real reason to venture out, step-son S is still working. if only four days a week. Luckily he's left pretty much alone working swing shift on a machine not near other workers. He can keep his distance without too much trouble. It's a good thing. It reduces the likelihood that he will bring home "strange bugs". As both P and I are in the High Risk group with our age and my diabetes, we are taking all reasonable precautions. How long our sanity will hold out remains to be seen. Lots of streaming, lots of surfing. I think it's time to do some deep cleaning. We bought the house brand new and still haven't finished unpacking everything. So what if it's been 3.5 years, these things take time!

2019 Finally...

Jan 6, 2019

This year has to be better than last, right?

I did have my left kidney removed  in November and have recovered quite nicely, thank you very much!

The doc went in via the two small incisions, around to my back and separated my kidney from the rest of me, pulled it around to the front and then stuck his hand in via the big cut by my bellybutton to pull it out. He took a picture of it at my request before sending it off to Pathology to be sliced/diced and analyzed: All the margins were clean and free of cancer. Success! It took me over three days to get my digestive system operating again (had to clean it all out for the surgery, lost four pounds.) The abdominal pain was quite intense for a week or so. You never realize how much you have to use those muscles until something like this happens to you. At least the hair they shaved off my belly has grown back enough now so anything touching it no longer feels like sandpaper.

So, now I'm down to dealing with my double vision and type 1 diabetes. I saw an ophthalmologist about my left eye, Third eye nerve palsy he called it and ordered a CT scan to make sure there wasn't a tumor or aneurysm putting pressure on the nerve, making my eye act this way. The scan came back clean. I have another appointment with him in several weeks to figure out what's next. 

I'm suppose to have another PET scan to check for any stray melanoma that might still be hanging around. A radioactive glucose solution gets injected for the scan. As I am diabetic my blood glucose number has to be below 200 for the scan to run properly. Three times now I started out the day below that but despite no food and only clear liquids 6 hours before hand, I have been over that by scam time.  Frustrating. I'm in contact with the Diabetes Management Team for help in how to prepare. Less carbohydrates, more protein before hand.  

Diabetes is not for sissies! Anything that goes into my mouth needs to be evaluated for its impact on blood glucose. It's amazing how much of our diet contains or consists of carbohydrates. My body doesn't produce any insulin anymore. I have to inject some before every meal, no matter how small, along with a daily shot of long term insulin. Even a snack while watching tv in the evening requires a shot unless it doesn't have carbohydrates or sugar like celery. That's four to five needle sticks a day. That doesn't count the blood glucose checking finger sticks either. My body is a regular pin cushion these days.

So, that's the story so far. Discipline, optimism and persistence required to face the future.

October Update

I'm  scheduled for surgery the first week of November. They will be removing my left kidney. The size, location and shape of the tumor make it less complicated and safer to remove the whole kidney. Less time to recover and heal afterwards too. So, I should be in good shape for Thanksgiving. That is assuming that I get my diabetes and blood glucose levels under control. I have been more aggressive with my insulin to keep the numbers down and also eating more to try to gain back some of the weight I've lost since June. We had to buy smaller pants to keep them from slipping off my hips whenever I walked across the room. It is a multifaceted problem. And then there are my eyes. I still have double vision looking to either side and cannot focus with both eyes to read or write. It's still a challenge to eat without spilling because I can't focus well on my food from the plate to my mouth. The dog now sits by my chair during meals. Hope springs eternal... and is often rewarded in his case.

Another Shoe Dropping

I was suppose to have treatment #5 last Wednesday. I had a monthly appointment with the Oncology RN the previous Friday. I had been very thirsty and consequently had to go to the bathroom frequently on the previous several days. I ended up very sluggish and vomited my breakfast before going for my appointment. In discussing what was going on with the nurse I became nauseous and vomited in the exam room. The preliminary thought was I was having a diabetic episode. They hooked me up to an IV and gave me anti-nausea medicine. My blood test came back with a Random Glucose count of 556. Normal is in the 100-200 range. I had Diabetic Ketoacidosis (DKA). I got an ambulance ride to the Westside Hospital where the ER doctors tried to figure out what was going on (I vomited again in the ambulance just before we got to the hospital). My Opdivo treatments seem to be the culprit. They elicited an auto-immune response where my T Cells attacked my pancreas and killed my insulin producing cells. The doctors and nurses worked on bringing my blood sugar level down. Later that evening they moved me to ICU where they checked me at least every hour. Bright and early the Saturday morning the doctor and his entourage took my history and went off to research instances of Opdivo causing diabetes. Apparently its quite rare, ~ 1%. Aren't I lucky. They put me in a regular hospital room where I was monitored until my blood sugar got back down to normal with regular insulin injections. Then the education started: visit from the dietitian on carbohydrates and how to count them, how to use the finger sticker to take my blood sugar level and how to give myself shots of insulin. I finally got home late Sunday afternoon with a blood tester, insulin, needles and lots of literature to read and digest. I've been giving myself insulin shots, morning and evening ever since. And will continue to do so for the rest of my life.
Good thing I'm not scared of needles or poking myself.

We had to meet with a Nutritionist last Friday for more detailed information about managing diet and insulin. There are lots of options and possibilities. Just have to make it all work together to moderate insulin and glucose levels. Last Monday we met with my regular doctor who will be managing my diabetes care. There are a number of things that I need to be aware of in terms of what can go wrong. Have to make sure my feet do not start loosing feeling or develop sores and the like. They will test the bottoms of my feet every time I see the doctor from now on. Also, I need to get my eyes checked and have them take a picture of the back of my eyeballs. That will be an annual thing. My eye appointment is in three weeks. I've noticed that I can't see as well in my peripheral vision. It's doubled when I look more than 45°s right or left. I can see things there but I can't recognize them very well. I need to turn my head so I can see it almost head on to make sense of it. The doctor said it's know that a small muscle in the side of my eye is affected and it may take several weeks before my body makes necessary adjustments. The sooner the better I say.


It seems that each thing that has happened to me has been worse than the last, changing our focus and giving us something worse to think about and deal with: a rash on my arm, melanoma on my back, surgery, liver and kidney biopsies, renal cell cancer, diabetes. I hesitate to ask for fear of the answer but what else could possibly happen???

We've compiled a list of questions and sent them off to the Oncology Team. Currently I'm scheduled for Opdivo treatment #5 a week from today. I expect we will be discussing my case with the Oncologist before that next treatment.

Milestones

Congratulations to our grandson, Eric, who graduated from Pacific U this morning with a degree in History. He plans to teach high school and coach baseball after he gets his teaching certification from the local Concordia University. That will take one more year. The graduation ceremony was nice, if a bit early (9:30 am) complete with band and bagpipes for the processions in and out of the stadium. Pretty neat. Years ago I completed my degree requirements at the end of a summer and so didn't have a formal ceremony. I marched down to the mail box and back when my degree arrived.
 Pomp and Circumstance.

Yesterday was the step-daughters last day at her job, finally. They had asked her to extend her final day for several weeks to help with her final "Month End" closing of the books and to train her replacement. But that's all done now and she should be arriving in Boise this evening. She's already exploring job leads and is ready to look at houses. She will be staying with her daughter, son-in-law and granddaughter until those details are worked out.
 The beginning of a new chapter.

In other news:
I went through nivolumab treatment 3 of 26 last week. Once again no side effects. We met with the oncology RN the day before. She wanted to know about our experience so far and assess my health to see if any adjustment were necessary. Not this time. We'll see her every couple of months. I will also get another PET scan in early July to make sure no more "hyper-metabolic" sites have sprung up. The CT Scan to check on the kidney tumor growth/no growth will be in early August.

In the mean time its "Steady As She Goes!"

Guests and Expert Opinions

These guys showed up for breakfast last week. This picture was taken before the dog noticed them...

They came up from the river to munch on some tasty leafs and buds.

In other news, we saw the Urologist last Friday. He's never treated a patient getting immunotherapy for a different type of cancer. His main concern is if it will hurt the healing process were he to do surgery. Normally he wouldn't fool around the tumor. He would  just go in and remove the offending mass, no questions asked. My Oncologist told him that it would have no effect on healing and should keep the 5.3 cm mass on my left kidney from growing.  The Urologist talked to us a lot about kidneys, renal cancer and options. That's what it comes down to, options. I am not experiencing any pain around the left kidney (much higher in the back than you would guess!) and do not have blood in my urine. These are major signs of tumor aggression. So, he is taking a wait and see position. I am scheduled for a CT Scan in August, three months. He said that if the mass hasn't shrunk at all by then, if it is the same size or has grown at all he will remove it. Depending on exactly where the tumor is on the kidney and how involved and attached it is to the kidney he will remove the mass or, if deemed too risky because of its location in relation to the major blood and lymph system connections, he may simply remove the whole kidney.

Possibilities for the future.

In the mean time I go back for my third infusion session next Wednesday.

The Other Shoe Dropping

The kidney biopsy result are in: primary renal carcinoma. Kidney cancer.
The doctor was apologetic when giving me the news. On the bright side he did say that it was very good that it was not the result of the melanoma spreading but rather a new incidence of cancer. Apparently kidney cancer is not as aggressive as melanoma. I meet with the urologist in two weeks to discuss where we go from here. I guess the options run from do nothing and watch it for changes up to removing part or all of the kidney. The oncologist said that the Opdivo treatments for the melanoma would also keep the kidney cancer from growing. Won't shrink it or kill it, just keep it from getting bigger. A step in the right direction.

My first Opdivo treatment was Tuesday morning. It went smoothly and, knock on wood, I haven't experienced any side effects yet. Of course there are some possible side effects, like liver or thyroid issues that cannot be detected without a blood test. My blood gets analyzed before each treatment. My next treatment is May 1.

In the mean time I do more research... kidney cancer, nivolumab, melanoma, cancer research results. The internet sure makes it easy to access all sorts of information - some interesting, some comforting, some scary, VERY scary. It's hard learning enough to be able to ask good questions of the doctors and nurses. I must say that everyone we've dealt with so far have been sympathetic and understanding.

Life goes on. It's a beautiful spring day here, lots of sunshine, temperature in the mid 60's. I spent several hours in the yard this morning and afternoon trimming and mowing the lawn and trimming shrubs and bushes. I also cleaned off the swings and dug out their cushions. When I was done with my chores we spent some time out back watching the birds soaring on the wind currents, listening to the river and getting some vitamin D courtesy of the Sun (but not too much...)