Health and Welfare

My oncologist decided to send me to a pulmonologist for my shortness of breath. It was tossup between drawing fluid off my lungs with a needle (been there done that) or having a nurse visit my home every day for the better part of a week and give me an injection of a high powered diuretic. The diuretic won.

So my insurance company decided that a supplier 120 miles away was better than one just across the river. They send a guy with supplies for the nurse. Two IV kits and one and a half day’s supply of the medicine. I’m a hard stick, so the nurse goes through the two IV kits without success. A check with the doctor and he says inject it with a syringe instead, but start an IV ASAP. A call to the supplier and they have to send the guy back again with more IV kits…and no additional medicine. The IV was finally installed but there was only a half day’s supply of medicine left. They finally send another day and a half worth of medicine and offhandedly mention to the nurse that the medicine they sent previously had expired. She asked them if they had informed the patient, they said no, but they would. It’s about 48 hours and I still haven’t heard from them. Still a couple of days left on the treatments and another box of supplies arrived this afternoon, I hope it has enough medicine to finish up the treatments…but I’m not going to bet on it.

In other news, we are in the process of trying to settle my brother-in-law’s estate. He was on Medicare and SSI his entire life and only got about $700 a month. He was frugal and was able to stretch the money, but he ate a lot of beans and pasta. He paid his bills and always dealt in cash. No credit history whatsoever. If he couldn’t buy it with cash, he did without. His only assets were the 20 year old mobile home he lived in and 1/3 ownership of half an acre of property. Not a lot. 

As a part of Medicare, one of the things he had to do was agree that they could have his trailer and other assets when he passed away. We just heard from the government about what they think he owes them...$127,000.00.  

  

They’ll have better luck getting blood out of a turnip.

Déjà vu All Over Again

I seem to recall going through something like this before. Oh yeah, remember the windshield wiper debacle? Yeah, I’m talking about more auto problems.  We replaced Vlad the Impala with a newer version last fall after I T-boned a high school kid who ran a stop sign. In mid-January I started noticing a whine in the engine. Some checking revealed foam in the power steering fluid, so I took it to the local auto mechanic. Diagnosis, it needed a power steering pump transplant which would run me slightly over $200. The whining went away for about two weeks. Taking it back to the shop, they replaced the defective pump with another one. Two weeks later it started whining again. Before I could get it into the shop, I spent a week in the hospital. Soon after being released, into the shop it went again. This time it was diagnosed with a bad rack and pinion…another $500. It’s now three weeks later and, guess what? It’s started whining again. I’m scheduled to drop it off at the mechanic’s tomorrow morning.  Adding in money spent on rental cars to get around in while it’s in the shop, I’ve poured about $900 into this so far. 

I finally got back in to see the oncologist this morning to review the results of my latest CT scan. It was about what I expected, a rather depressing visit. The cancer is continuing to grow and now occupies most of the lower portion of my right lung. I also heard the “T” word for the first time today. I knew it was coming, but I was still a bit shaken by it, “Terminal.” No mention of how much longer I’ve got, I should have asked but I was kind of speechless at the time. The fact is that it’s pretty doubtful that a miracle recovery is on my horizon. The immunotherapy had been put on hold while I recovered from my hospital visit and got weaned off of the steroids. I received another treatment today, hopefully it will resume slowing down the progress of the disease for a while.

People are continuing to pray for me and I appreciate it more that you can imagine. Folks sometimes tell me they are surprised that I can write about all of this with a sense of humor or a modicum of contentment. I have pretty much accepted this situation as just another episode of my life, perhaps the series finale. We all are here for a finite time and none of us know exactly when the end will come. However I now know that my end will be sooner that I had previously thought. It’s like I got a note from the Grim Reaper that I’m on his short list, which is more than many folks get. I’m happy that I have been blessed with 65 years, many more than some. A number of my friends and peers have passed on already, more and more in recent years. I am grateful that I have, so far, been relatively free of any severe side effects from the various cancer drugs I’ve been taking. No nausea or any of the dozens of other nasty things mentioned in the medication info sheets. As for my sense of humor, I see no reason to be downhearted. I want to enjoy what little time I have left, there is no room for self-pity or anger in that equation. God has given me a wonderful life. Nearly 40 years married to my best friend, three tremendous children and two fantastic grandchildren. Certainly there have been some bad times, but through it all I knew that God had my back. Everything so far has eventually worked out for the best. What do I have to be angry about? One of the things that gives me the most pleasure is being able to make someone laugh or smile. Whether it's just a silly comment on Facebook or a Photoshop image of a guy in a turban playing Monopoly saying that he wants to put a suicide bomber on Boardwalk, knowing somebody somewhere might have done a spit take gives me great joy.

It might be the last episode of the series for me but I’m looking forward to the spinoff, I know it’ll be great!

Flat On My Back

I started a new immunotherapy on February 4^th. I didn’t start experiencing side effects for a couple of days, but then my heart went out of rhythm and my shortness of breath got quite a bit worse. I’ve had heart rhythm problems for a long time, so I didn’t get too worried about it. The spells usually last only a few hours and then I go back into rhythm. Being a “tough guy” I decided to ride it out and not get too excited about the whole thing. I was a little concerned about the shortness of breath, it got to the point I couldn’t take more than ten or fifteen steps without stopping to rest for a minute or two. But I’m a pretty sedentary fellow, I don’t do a lot of walking anyway, so I just sat around at my desk or in my power recliner and took it easy.

The spell didn’t last a few hours, it lasted three days. Finally, as I sat waiting for the irregular heartbeat to go away, I noticed a change slowly creeping up on me. It seemed to be getting worse. My breathing became even more difficult and I became a bit disoriented. My wife had gone to the bedroom to take a nap and my grandson was plugged into a video game in the next room. If I stood up, I knew I would collapse. I realized I was ALONE, flat on my back, and rapidly going downhill. I wasn’t sure what to do, if I called would somebody actually hear me? After a few moments I did call and my wife was there in a flash. By this time I could feel myself getting ready to faint and incoherently told my wife to call an ambulance.  Of course she has low vision and can’t see the numbers on the telephone to call 911. She handed me the phone. I can remember thinking…how do you dial 911? After a couple of tries, I hit the right number combination and handed the phone back to her to get an ambulance on the way.

While waiting on the squad, I reached up and touched my forehead and it finally dawned on me what was happening. My forehead was wet and clammy. I was disoriented and ready to faint. My blood sugar was going low! I needed sugar and had my wife go get one of my grandson’s juice pouches. One of those tough mylar things with a tiny little straw that you have to poke in just the right place. After a half dozen tries, I finally tore open the pouch with my teeth and chugged the whole syrupy thing. Within a couple of minutes I could feel my body starting to crawl up out of the pit of despair. 

By the time the ambulance arrived, my sugar was back up to 95. For normal folks, that isn’t too bad, but for me 95 is still pretty low. So I was still a little shaky when the EMT’s started working with me. It was decided that I needed to take a trip to the ER, particularly since I was having some afib also. They dragged me out to the ambulance on a cot and loaded me in the back. As they prepared to leave, they grabbed an oxygen tank and stuck a cannula under my nose. The tank was empty. They grabbed the spare tank…also empty. One of the EMT’s astutely observed “That should never happen.”  Due to some unusual circumstances, two ambulances had shown up, so it was decided to unload me from the first one and reload me into the second. Why they couldn’t just trade oxygen tanks was never considered for some reason.

While on the way to the ER, it was determined that I needed an IV line. This decision was made just as the vehicle started down Pothole Avenue. A three or four mile stretch of road that has so many craters in it you’d swear it was a war zone. I’m a hard stick anyway and the thought of an EMT trying to start an IV in the back of a moving vehicle running over potholes is close to my worst nightmare. I was amazed that he got it started on the first try. I doff my hat to you sir, you were amazing.

By the time I arrived at the ER, the super-sugar juice had kicked in and I was back among the living. I ended up sitting around for about four hours and then was sent home. Nothing was done regarding my irregular heartbeat which finally cleared up the next day. The shortness of breath remained however.

My next immunotherapy treatment came a few days later and the afib came back along with it.  I seriously believe that the treatment is causing the problem although the list of side-effects lists it as an extremely rare occurrence. Several more days of irregular heart rhythm and I went to my regular appointment with my cardiologist. By this time I was resigned to the fact that something was seriously wrong and agreed to be admitted to the hospital when he suggested it. CT scans, X-rays, blood tests, pulmonary function tests, etc. proceeded from that point.  Finally I was given an infusion of steroids and antibiotics and I snapped out of my funk almost immediately. Like night and day. One minute I was barely able to drag myself out of a chair and the next I was up walking around fairly well. They insisted on a full five day course of the steroids, but I felt amazingly better. It was sort of like a mini-vacation except that it included getting stuck with needles and such. I was released a couple of days ago with a final diagnosis of pneumonia.

My next round of immunotherapy is tomorrow morning, I’ll be curious to see if the irregular heartbeat comes back for a third time.

Update: The third round of immunotherapy has been postponed until my oncologist can obtain the doctors notes and test results from my recent stay in the hospital. Preliminary review of the CT scan interpretation indicates the lung cancer is continuing to grow. The steroids have been put on a maintenance level tor the time being. An MRI brain scan spotted a possible malignant skin cancer on my head, having a biopsy done on it in April. I should know something by late next week on where things proceed from here.

It's All in The Timing

I’ll admit that I’ve never been very good at math. Word problems in particular give me a lot of trouble. I was okay when my new doctor made an appointment for 10:50 a.m., but then his office called the next day and said they wanted me to arrive 30 minutes early. Add the time needed to get to his office, about 45 minutes, and then add a few more minutes in case traffic is heavy, and then a few minutes extra so my wife can get her act together before we leave the house.  My mind just went into shutdown mode when I tried to figure out exactly what time we needed to head out. We ended up leaving about an hour earlier than we needed to. Then I didn’t get in to see the doctor until about an hour past my appointment time.

I think perhaps the confusion might be linked to my cancer or the medicine I’ve been taking. I seem to be having some trouble with short term memory such as remembering lists of things to do. For example, if I am at a fast food drive thru window and need to order for myself, my wife and the two grand-kids, I struggle to get the entire order correct. I'm also noticing more problems than usual remembering words when I'm trying to explain or describe something. It seems to be more prevalent when I'm under stress.

What was I saying? Oh yeah...anyway, I begin immunotherapy treatments this Thursday with a CT scan a few days later. They said the side effects of the new medicine are typically mild, I’m hoping that will be the case with me. My particular cancer isn’t curable, but the new treatment is supposed to extend survival rates by a couple of years for around 25% of the population.  I’ve been binge-watching an old TV show on Netflix lately, The 4400. Part of the show plot was that a free medication was made available that had the potential to give anyone who received an injection of the stuff a random “super power” of some sort; mind control, telekinesis, invisibility, et cetera. They could also become a walking death trap for everyone around them. Plus there was a 50% chance that the injection would kill them, yet folks were lining up to get the shots. That’s sort of how I feel about this new medicine they’re about to put me on. A 25% chance it will work is lousy odds, but hey, what have I got to lose? Oh, and this medicine isn't free...try $6000 every two weeks on for size. It pays to have good health insurance, folks.

I’m still feeling normal, if I hadn’t seen the CT scans, I’d not realize anything is wrong with me. I see other folks suffering from cancer who are so weakened by treatments they are barely able to get around, suffering from nausea, vomiting, diarrhea, and all sorts of other things, and I wonder why I’m feeling as well as I am. Perhaps that stuff is still down the road for me.

In other news, the “Blizzard of 2016” wasn’t as severe as predicted, but it still dumped about eight or ten inches of snow on the ground. It was quickly followed by warmer temperatures and two days later the snow was mostly gone except for a few piles here and there. Unfortunately, due to the warmer temps, the limestone we had put on our driveway this past summer has mysteriously disappeared to be replaced with slippery muddy ruts.

My car was making some ominous whining and grinding noises a couple weeks ago, so I took it in and had the power steering pump replaced. When I picked it up, the mechanic said there was still a little air in the lines but the noise should go away after driving it for 30 or 40 miles. Two weeks later and the sound has been getting progressively worse. I’ll be dropping it off at the garage again tomorrow for a follow-up to see what the problem is.

Well, that’s the dirt from this neck of the woods. I’ll tell you more when I have something else to complain about.

In Remembrance

If you follow this blog for very long, you'll begin to realize that I tend to exaggerate. For example, I've tended to focus on the grumpy, cantankerous side of my brother-in-law. I now find that I must be somewhat more serious and tone down my characterization of his personality. He passed away last Monday and my wife and I have been busy making funeral arrangements in the middle of what the local news has been calling "The Blizzard of 2016."

While he could out-stubborn a mule and was quite aggravating at times, my brother-in-law also had a heart of gold. I can't begin to count the times he helped out my wife and I. Total strangers were just as likely to earn his favor. He even gave away his only vehicle to someone he barely knew because theirs had broken down and couldn't be fixed. While my wife speaks about her older brother throwing dirt clods at her when she was little, she remembers many acts of kindness as well. He loved to play cards and Scrabble. He fed feral cats on his doorstep and went through about 100 pounds of cat food a month. He watched wrestling on TV as well as reruns of old westerns from the 50's. He was obsessed with Bigfoot and model trains. Possums, skunks and groundhogs feared his pistol and we frequently heard him shooting at one in the middle of the night. John Deere tractors held a fascination for him and you rarely saw him without his battered old green and yellow baseball cap. When the weather turned cold, his John Deere jacket came out of storage. He loved a practical joke and I'm sure his spirit is somewhere having a good laugh at us having plan his funeral with a foot of snow on the ground.

While I frequently wrote about him and characterized him as a grumpy old curmudgeon, it was with my tongue placed firmly in my cheek. Yes, he could be crotchety, pigheaded and obstinate, but he was still dearly loved by everyone in the family and will be greatly missed for many years to come.

Yeah...That'd Be Great

I received the results of my latest CT scan on Monday. The doctor's appointment wasn't until 3:30 p.m. and valet parking closes at 5 p.m. I knew I wouldn't get out in time to claim my car so I parked on the street. The problem is the closest on-street parking for the hospital is two blocks away, a long way for me to walk. But I did it.

The scan results show the tumor is continuing to grow, the new medicine doesn't seem to have helped slow it down any. So they're going to put me on a new immunotherapy drug which was recently approved by the FDA. It's administered intravenously every two weeks. At least I won't have to drive to Gotham to get it done, there's a local doctor that can administer it. I'm supposed to return for another CT scan in six weeks. Doctor Whoosh did spend a bit more time than usual talking with me, I think it was because the nurse practitioner took the day off. That evening my brother-in-law starts swelling up in the nursing home. Apparent kidney problems, which meant a late night trip to the ER where he was admitted for treatment. That was Monday.

Tuesday he was released and sent back to Fartland, so we went out to make sure he got settled back in. As grumpy as ever, refusing to eat anything or even talk to anybody. Best you can get out of him is an angry grunt.

Yesterday, Wednesday, I took the wife to dinner at a four star restaurant (nice place!) and a special showing of a movie she has been wanting to see for a long time. Almost a two hour drive, but totally worth it. On the way home I made a wrong turn and ended up in the back of nowhere. I knew by the route number that the road would eventually get me to my destination, but it seemed to take forever and I was low on gas. Every little burg that we drove through had rolled up the sidewalks at sundown, so I was getting nervous when we finally found an open gas station. Standing there pumping the gas I remembered I had turned my phone off at the movie theater. I switched it back on and discovered I had a message. My brother-in-law was back in the ER and we're still miles and miles away from a four-lane highway.

We eventually made it back to civilization around midnight and spent the night with him in the ER, finally getting to bed around 5 a.m. this morning. 11 a.m. we got a call, they've sent him back to Fartland again, this time with a bi-pap. So it looks like another trip to make sure he's settled back in again.

24 hours without a major health crisis. Yeah...that'd be great.

Grumpy Old Men

It's update time again! My brother-in-law has been released from Gotham Hospital and sent to Fartland Nursing Home for rehab on his broken arm. A lot closer to home. Now it's a 30 minute drive instead of over 2 hours. 

I called the nursing home "Fartland" because it's mostly full of old farts...so my brother-in-law fits in pretty well. To say he's the Grinch channeling Scrooge is an understatement. He savors schadenfreude like Paula Deen loves butter. His day isn't complete until he ruins someone else's. I've known him for 40 years and he's always been like that. It took a while, but eventually I learned to just ignore the mean spirit and accept him for what he is...a grumpy, technophobic, cantankerous, bigoted, reclusive, diehard fan of wrestling who happens to be the brother of my wife who loves him dearly.

He's mending well and able to get around fairly well but it's sounding like it will be around the end of January before they let him go home. Once there he'll be eligible to have a visiting nurse and someone to help him with housework two or three times a week through some of the social service agencies in the area. Since he lives in a mobile home behind our house, my wife will probably be checking in on him daily as well.

In regards to my own health, I'm scheduled for another CT scan in a couple of days to evaluate the effectiveness of my new medication. I'm a bit nervous about that. My hair has been gradually turning from white back to gray but my beard remains white. I let it grow out into a full "Santa Claus" beard over the last few months but trimmed it back to my usual 3/8" length today. My voice has also become a bit hoarse, a common side effect of the medication. Other than that, no major changes. I had a routine checkup with my primary care physician this afternoon, my A1C is doing well along with all the other vitals. I also got a shot of Prevnar 13 as a 65th birthday present. All in all a good visit.

Pow!

Hey, I'm back! It's been a couple of months since an update. The main reason is that not a whole lot has changed on the health front for me. One visit to Dr. Whoosh a few weeks ago and another coming up on Monday, but no scans have been done so they don't really know if anything is happening with the new medicine or not. I'm expecting them to do another scan around the end of December. The visit Monday will most likely be a carbon copy of the last visit, five or ten minutes talking to the nurse practitioner and 45 seconds with Dr. Whoosh.

In other news, my 70 year-old brother-in-law fell and broke his arm last week. We called 911 and had him taken to the local hospital ER by ambulance. After a couple of hours and an X-ray of the arm, they first said they were going to send him home in a sling. A few minutes later the ER doctor came in and said she'd changed her mind. He was probably going to need surgery and the best thing would be to take him to a hospital in Columbus.

I'd never been to that particular hospital so I asked the for directions. They gave me a sheet of directions from Google Maps, no actual map though. I read it over carefully, thought I could find the hospital, and headed North.

Two and a half hours later I almost found the hospital...almost being the key word. I got within one turn of getting there. It was rush hour and starting to get dark, I couldn't see the street signs very well and missed a turn. After going about a mile or so, I realized I'd missed it and turned around. I missed it again on the way back and ended up on the Interstate going in the wrong direction. I finally found an exit to turn around again but it was completely dark by that time and there wasn't an on-ramp to get back on the Interstate going back to my destination. I pulled into a fast-food joint with free wi-fi and looked up the street map on my smart phone. After studying the map for a while, I headed out again...in the wrong direction again. After about 10 miles of driving I came to a dead end and turned around and went back to the burger joint. This time I got my directions straight and got back on the Interstate and eventually found the hospital.

This particular hospital is apparently considered the place to go for trauma cases. They are located in the middle of town and get all of the really bad injuries including gunshot wounds, etc. with some rough looking people wandering around the halls at times. After waiting a while he was given a bed and I followed the gurney up to his room. A couple of doors down was an old drunk berating a young nurse who was only trying to take his vitals. He was calling her some pretty nasty names but she was professional about it and kept a smile on her face the whole time. Another lady was talking on a cell phone in the hall, explaining to someone what the word "incarcerated" means.

After more X-rays the doctor decided that my brother-in-law didn't need surgery, all he needed was a sling. That was seven days ago. He's still in the hospital. His blood work and urine test indicated he had some kidney problems. We already knew that, he's been seeing a kidney doctor locally for about a year...but they don't want to release him until they get some better numbers.

I was in to see him today and noticed a few minutes after arriving that someone in the next room was making some loud noises. At first I thought that it might be someone was being moved and was experiencing some pain...but soon realized that the exclamations didn't really fit that scenario. It was more like the script from an old Batman TV show with strange hoots every thirty seconds or so. After a few minutes of this, I started writing down all of the exclamations. Here's a list: Bang! Pow! Hoot! Yeehaw! Woo! Whoop! Woot! Ahhhh! Lalalala! Yay! Boom! Fight-fight-fight! Whoooo! Yahhhh! Noooo! Hey-ho! Awwww! Ohrah! Yes! Oooo! Yahoo!

Heading back tomorrow, hoping they'll release him but not too optimistic about the chances.

Keeping on keeping on

With another CT scan under the bridge, I got the results from Dr. Whoosh on Monday. If you've been following this blog for a while, you'll remember that he took me off of my cancer drugs at the end of July. I've gone two months with no medication. It's scary to go cold turkey when you're dealing with a disease that's eventually going to kill you. Sort of like saying, "Okay, I'm dropping all my defenses, take your best shot!"

I expected to hear that the tumor in my lung had grown dramatically, but the news was not quite that bad. Yes, it's still growing, but it's only "slightly" larger than it was at the end of July. In my opinion, the term "slightly" is debatable, it's grown about a centimeter in diameter. I'm on a new oral medication starting this morning, something called Inlyta.  Inlyta...does that mean I'm being enlightened?  Like the previous drug, Inlyta doesn't cure the cancer, it only slows down it's growth. What I've been able to dig up on the Internet about it indicates that it retards the progress for about ten months on average. Also, like the previous drug, the side effects sound relatively mild...I get to keep my hair for the time being. Hoarseness, elevated blood pressure and possible development of calluses on my hands and feet appear to be the most common fallout.

I gathered the results of all my CT scans over the last year and plotted a graph of the tumor size over time and it looks like the previous medicine pooped out after about four months. The graph shows a steady growth rate since January of this year, even through the period of no medication at all. I'm hoping that this new medicine will put a plateau on that line.

I didn't qualify for the clinical trial of the intravenous drug that Dr. Whoosh mentioned on my last visit, something to do with my kidney functions being slightly out of range. I was a little concerned about that anyway. It's a two and a half hour drive to the capital city and winter is on it's way. I was not looking forward to driving in ice and snow every two weeks, so the new oral medication might work out for the better in the long run. With all of my other medical problems driving in bad weather conditions is a potential disaster.

In other news, things since my last update have been rather rough. A sixteen year old girl with a new driver's license pulled out in front of me a couple of weeks ago. Thankfully no one was injured but both vehicles were totaled. After a week of hitching rides and borrowing vehicles to get to various appointments, I now have a new set of wheels. Well, not "new" new, it's a used vehicle but six years newer than the previous one, another Chevy Impala. I had just spent about $200 in repairs on Vlad [heavy sigh]. My wife has decided to name the new one "Ivan."

I suffered some atrial fibrillation which resulted in four days in the hospital. Adjustments to my medications seem to have calmed that down for the most part. My brother-in-law spent about the same amount of time in the hospital for a urinary tract infection, but not concurrently. It was, however, during the period of time when we were without a vehicle. That constituted something of a scheduling nightmare.

We've also been going through some other family drama that I won't go into detail about except to say that it's been a bumpy ride for the last month or so.

I guess that's about it for now, more updates to come as they happen. Keep praying!