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...)

Clean Living Pays Off

The liver biopsy results are in: BENIGN.    Woo Hoo !!!!!!

That was certainly good news. Now we turn our attention to the mass on my left kidney. The doctor looking at my PET Scan described it as 

"[The] hypermetabolic mixed solid and cystic left renal mass is suspicious for primary renal neoplasm"

Once again the doctor postponed my first infusion treatment so as not to muddy the kidney biopsy results. Wednesday they called to make a tentative appointment for next Thursday. And again the only site they do this procedure is an hour and a half from where we live now. They start very early in the morning there but did slide my appointment to mid-morning to give us more time to make the trip. 

OK. 

Then they called yesterday. The radiologist scheduled to do the procedure wanted a better look. They squeezed me in yesterday afternoon for a quick CAT Scan. Now I've had an MRI scan, a PET scan and a CT scan. One more and I get a free scan???

My first nivolumab infusion is now scheduled for the 17th barring any unforeseen developments. I can wait...

Nevermind... for now.

My medical case manager called yesterday. The oncologist said he didn't want anything like the first nivolumab (Opdivo) treatment to "taint" the liver biopsy results. So, today's first infusion was canceled. It's now scheduled for April 3rd. I sent a message to my doctor asking if he wanted the kidney biopsy done before that first infusion treatment also. If so, they'd better get it scheduled soon!

In the mean time, we wait.

Scars and next...

The dermatologist cut out the basal cell carcinoma on my shoulder and stitched it shut.

A week later one of the stitches broke. I worried about it for nearly a week putting bandages over it to keep it from snagging and unraveling even more. I called but was told to keep the original appointment the following week. I didn't have any problems with the incision opening up. I guess I heal fast. 

We were busy two weeks ago:

Monday               MRI Scan

Tuesday               PET Scan

Wednesday          Initial meeting with the Oncology Doctor re where we go from here: Opdivo (aka nivolumab) treatments every 2 weeks for a year.

Thursday             Met with the Oncology Case Manager about details – first infusion scheduled for 20^th

Friday                  Call from the Oncologist - the PET scan showed some suspicious spots: 2 on my liver and 1 on my left kidney. Hyper-metabolic activity he called it…

Only one appointment last week. We met with the financial aid officer last week to see if we could get some relief from the $5k+ per treatment drug cost. Yes, we can. That eases some of the worry. 

My surgeon called late Friday afternoon. He wanted to let me know he was referring me to a Urologist to look at the mass on my left kidney. We talked a bit about the biopsy’s, how they’re performed, a little bit of what to expect but he wouldn’t speculate regarding what exactly the spots were: melanoma related, another type of cancer, benign masses or smudges on the scan. He's also ordering an ultra-sound of the rest of my lymph nodes in my arm pit. Then they will get checked every four months for changes.

So, now I'm just waiting for the first infusion treatment Tuesday. There is a long list of side effects. I've been speculating as to what to expect and what I will experience. This is not the best topic to be dwelling on at this time...

We have to drive up to Portland for the liver biopsy on the 27th. They'll use ultrasound to exactly locate the areas in question. Once again I can't eat or drink anything before hand. I've been told to expect a several hour recovery time while my liver stops bleeding. Hopefully I will be done before the afternoon rush hour because it will be P's turn to battle traffic for the several hour drive home.

Looks like I still have a lot of doctors and appointments in my future.

Don't ever turn your back on a surgeon, this may be the result!

Life goes on

NOTE: I wrote this in mid-February meaning to get back and flush out the details. It's been a month now, and I am working on documenting my continuing adventures in the health system. I should have a new entry in several days. In the mean time, here is how it all got started.



It has been a year plus since I retired.
I think it is safe to say that I have gotten used to a more relaxed schedule for my days. The weekends are truly becoming days of rest for us. We now tend to avoid shopping on those days because of all the people who work during the week and the weekend IS their days off.

I changed health providers at the beginning of the year. I had been very lax the last several years when it came to going to the doctor. I have been blessed with a very healthy body, no real problems, not taking any prescriptions: if it wasn't a bloody stump it could be ignored. Well, first thing I got sent to a dermatologist for a rash on my shoulder that wouldn't go away. The doctor identified three spots including my shoulder to do a biopsy on. Two including my shoulder turned out to be basal cell carcinoma but the third was diagnosed as melanoma.

After the biopsy, marks by the surgeon as to where and how much he would cut out. It's about 4-5 inches top to bottom. That's my right shoulder blade next to it. 

Last Wednesday I had surgery to remove the melanoma. The doctor got his "pound of flesh." They used dye to trace body fluid movement from the melanoma site to a lymph node in my right arm pit. So, after excising the melanoma, he shaved my arm pit and cut out the sentinel lymph node (that's what they call whichever lymph node fluids go to first from the melanoma.)

I am recovering. Next week I get to go back to the dermatologist so she can cut out the basal cell carcinoma sites. This will only require a local anesthetic. Not nearly as traumatic. I should come out of it with some bandages and a clear head, not like trying to recover from the general anesthetic the gas passer used for the melanoma surgery. I'd met the surgeon earlier but I met the rest of the surgical team just before surgery. The anesthesiologist seemed to be in a very good mood, explaining how he was going to make me feel VERY good and put me to sleep. He questioned my susceptibility to nausea. It doesn't take much to make me seasick, so he added some anti-nausea drugs too. I did feel very good...until I woke up in post-op. I wasn't in any pain but was on the verge of vomiting until we drove the 45 minutes back home and I was able to crawl into bed. Having a memory foam mattress helped a lot in that it conformed to the new contours of my back without undue pressure. I could certainly feel the pain and tugging on the incision every time I tried to move, especially when I rolled over.