The adventure of yesterday’s PET scan is behind us. It was a wild ride but I was able to have the scan and the MRI yesterday. I was more nervous worrying that the scan might have to be postponed than I am today about the results. I figure the cards have been dealt, and I’ll just have to play it out, even if it’s not all aces.
Later today, I find out the results of yesterday’s PET and MRI scans. This will determine whether my treatment is succeeding or failing or just holding steady. As I said, while I am certainly concerned about the results, I was much more stressed yesterday worrying that I might not have the PET scan because my glucose levels were out of range. It was really touch and go for a while and a cliff-hanger right up until the very last minutes before the scan, but in the end, I was able to have both scans. So, that worrying is behind me.
It might seem funny that I was more worried about having the scans than the results of the scans, especially since the stakes are so high. If the scans show that the treatment is still working, hurray! If the scans show that the treatment is not working and the cancer is progressing, I don’t really have a plan B as far as further treatment goes. A lot is riding on these results, so you think I would be more worried than I am, right?
I always go back to this old psychology experiment I read about once. This was back in the day when researchers were allowed to do cruel things to monkeys in the name of science. These days, they do their experimenting on humans, but that’s a topic for another post.
In this particular experiment, two monkeys were both subjected to electrical shocks at random intervals. A few seconds before each shock was administered, a light would flash, so the monkeys would know that another shock was coming. One monkey, the test monkey, had a lever that, if he pressed it between the time the light flashed and the shock was administered, would prevent the shock some of the time, but not all of the time. The other monkey, the control monkey, had a similar lever but it didn’t do anything. He got the shock every time, regardless. Interestingly, the monkey who had some power over the outcome eventually died from the stress. The powerless monkey, who had no choice but to accept that the shock was coming, survived.
I’ve never considered myself a fatalist, but between now and the time I hear the results, I am the powerless monkey.
OK, let me get this out of the way now. I am currently tired of people who tell me to have a positive attitude. Fuck that. I’m tired, and frustrated, and sick. Don’t tell me to have a positive attitude. Don’t tell me what to feel or what to think. I know you mean well and all, but you’re just pissing me off. I’ve earned my bad attitude and I’m going to wave it like a flag if I want to. And that goes for anyone with cancer, or any serious illness, or any other pain-in-the-ass life circumstance. Back the fuck up with your positive attitude and let us feel what we feel and get angry or moody or pissy or sad or whatever it is we happen to be feeling in the moment. Where do you get off telling us not to feel that? Offer an ear, or a shoulder, or words of support. That is what we need from you. We do not need an emotion coach. Our emotions are the only thing keeping us sane and if we aren’t allowed to feel them we will go crazy. Seriously crazy. I apologize if our emotions make you feel uncomfortable just as I’m sorry that our cancer makes many people uncomfortable, but we did not choose this. I apologize if our bad attitudes are not socially acceptable, but learn to deal with them if you truly want to “be there” for us. Bad attitudes are just another symptom or side effect like fatigue or diarrhea. We may not have it all the time but when we do, please don’t tell us to ignore it or push it aside. There’s no way around it but through it. Deal with it. We sure as hell have to.
Here’s the other thing. When you tell someone to keep a positive attitude, it’s a little bit like blaming the victim. I’m sure that never occurred to you, but when you tell me to keep a positive attitude, I’m thinking “Christ, another thing that I’ve failed at.” Well, not today. My bad attitude and I are doing just fine today, thank you very much. Tomorrow I might be all rainbows and sunshine but today this is how I feel and that’s OK. OK?
Let me tell you about my week. I spent another week dealing with the four horseman of my insurance coverage: Cigna, CVS Caremark, CareCentrix and US Med Supply. I swear to god that I’ve spent more time on the phone dealing with these companies than I spent in my previous forty years as an insured adult. Much more. On Saturday, I finally received the supplies for my CGM which allows me to get accurate and continuous readings of my blood glucose levels. In the meantime, I ran down my supplies of glucose test strips and have still not gotten the refill to go through. I’m sure that there is more paperwork someone needs to fill out for one of the aforementioned horsemen, which means a few more phone calls next week. Even though I have my CGM supplies, I still need to have test strips for those times that I need to verify my sensor reading or for those times that my sensor is off or offline.
Also, this week I finally got pre-approval for my PET scan on Monday. I was really anxious about this because I know that insurance companies don’t like paying for PET scans because of the high costs. Cigna originally denied it and then my doctor had to schedule a peer-to-peer meeting as part of the appeal process. I didn’t hear much more from my doctor’s office than that they were going to schedule the peer-to-peer last week. I contacted them several times and got the same answer. I didn’t call for a few days figuring that they would let me know if the status had changed, but finally I contacted them on Thursday. They told me that it had been approved, but they only contact patients if the procedure was NOT approved. Sheesh. I called the insurance company to verify and got the authorization code for the procedure so I know that the PET scan is truly on for Monday. At this point, I don’t trust anybody.
Lastly (I think), I got in to see a urologist on Friday regarding my urinary issues. To recap, I’ve got an enlarged prostate which is making it difficult for me to fully empty my bladder and which causes me to go to the bathroom frequently. This is especially annoying at night as I need to go to the toilet 3-5 times per night. I can’t remember the last time I slept through the night. The urologist didn’t see anything wrong other than my big prostate and he prescribed Flomax. I filled the prescription but I haven’t taken it yet because I’ve read that it can cause elevated glucose levels and I need to keep those levels in control for my PET scan on Monday.
Yeah, that PET scan. This is the big one. That and the MRI on my brain that I’m having the same day. My last two MRI and CT scans have been stable, meaning that there have been no new metastases and no growth to the existing lesions. Now the PET scan will tell if the existing lesions are active tumors. They do this by injecting me with glucose and the areas with active tumors will “light up” on the scan as the tumors feed on the sugars. Under normal circumstances, I would be extremely anxious about these scans because this will tell if my treatment is still working. I hope so because I’ve been kicked off the immunotherapy treatment due to my recent bout of colitis. As I’ve stated before, I don’t really have a plan B if the scans show active disease.
And that’s under normal circumstances. Nothing is normal about melanoma. Because PET scans are based on the uptake of glucose in the blood, it is important that my blood sugar is not too elevated going in to the test. I’m not allow to eat anything or have any insulin for six hours before the procedure and my blood glucose level needs to be below 220 just prior to the procedure. If it higher than that, the test will need to be rescheduled. If my glucose drops too low in those six hours, I will need to treat it with food, and the test will also need to be rescheduled. No pressure, right? The only advice I have is to eat a high protein, ultra low-carb diet prior for 24 hours prior to the test. So far today I’ve consumed a four egg omelet with cheese, four ounces of vegetable juice and a Muscle Milk protein shake for a total net carb count of about six carbs. I’m concerned because my glucose level this morning had crept up to 229 before I treated it with insulin. If it does the same tomorrow morning, I won’t be able to treat it. I’m currently at 123 and holding steady. Knock on wood.
Getting back to my attitude for a minute. I’m really trying to keep a positive attitude, especially when it comes to tomorrow. I do believe that thoughts matter, but so do emotions. They are both part of my reality now. I hope I haven’t offended anyone with my rant. I just needed to get this off my chest.
I truly hope that this old saying is true:
The people who matter don’t mind, and the people who mind don’t matter.
This week started with a fall. I was carrying some things into my shed last weekend. On the third and final trip, I slipped on the ramp coming out of the shed and fell hard on my butt. It’s my own fault because the ramp, being on the north side of the shed, had some moss/algae (green stuff) on it that I should have attended to before. Being wet and slimy, the ramp was an accident waiting to happen, as the say. Well, the accident happened. Lynn reminds me that it’s important to note that what I incurred was a slip-and-fall and not just a fall. Whenever I go to the doctor’s, they ask me if I’ve had any falls. I guess they want to know if my coordination is going. Next time I go, I’ll have to explain that I had a slip-and-fall and not a regular fall. I don’t know if they’ll buy that. They’ll probably just put a note in my chart stating “patient reports experiencing a fall.”
After I slipped and fell. I lay there for a moment evaluating my condition. My left knee was badly twisted because my left leg stayed planted while my right leg slid out from under me. I still have a nasty bruise on that knee although it doesn’t hurt very much now. My butt, hip and back hurt like hell. I wasn’t sure if I would be able to get up and I looked around to see if anyone could see me. I was visible from the road but only if someone passing by looked down my driveway. I was glad of that even though I was home alone and, as I said, not sure if I could get up. There’s that pride thing, which is stupid because if I couldn’t get up, I would have had to crawl to my car to get my cell phone to call for help. The good news is that I was able to get up and I wasn’t hurt as badly as I thought. My lower back hurt like hell and still does, especially in the morning. It’s getting a little better each day, but just a little. The healing for these things is slow, or so I’m told. I’ve never had a back injury like this before and I hope to never have another one. Two Excedrin Extra Strength in the morning seem to take the edge off enough so that I can function during the day, but I still can’t do simple things like bend over to pick up either of our small dogs.
I remember when I was lying at the bottom of the ramp thinking “Really? Melanoma, diabetes, colitis aren’t enough, you gotta throw this at me, too?” OK, so it’s not the trials of Job, but I admit to feeling a bit sorry for myself this week. And then came my battles with the insurance company. Poor Job never had to deal with Cigna.
Let me explain. On the Monday after my fall, it was time to replace the sensor for my CGM (continuous glucose monitor). This is something that I have done about a dozen times before as they need to be replaced every ten days. I’ve never before made an error causing we to waste a sensor but this time I did. It’s embarrassing for me to report what I did but it is just stupid, stupid, stupid. Honestly, it stuff like this that makes me seriously wonder if my cognitive skills are declining. Each sensor comes with an applicator and each applicator has paper on the the outside that you need to remove before applying the sensor. The paper has a code on it that you need to enter into the app in order to activate the sensor. Well, I forgot to remove the paper before I applied the sensor. I remember thinking that it didn’t look right and as soon as I realized why it didn’t look right, I knew that I had screwed the pooch. I had wasted my sensor because you only get one shot at applying the sensor. If you have to take take it off, or if it falls off, you can’t replace it. I had wasted that sensor and I didn’t have another one to replace it, so I would have to reorder another box from the pharmacy and wait until the next day to replace it. Or so I thought.
This is where my new nemesis, Cigna, comes in. Of course, they denied the claim. This wasn’t totally unexpected as this was the first time I had requested CGM supplies through them. BCBS had also denied my claim for CGM supplies, but the appeals process was pretty straight-forward and in short order they did approve them. Not so with Cigna. I’ve spent literally hours on the phone this week talking to the various insurance contacts, my endocrinologists office, and even CGM manufacturer (Dexcom). I’ve honestly lost track of who I spoke to when, but I can say that the staff at my doctor’s office was not very helpful, nor was my doctor responsive when I placed multiple calls trying to get updates from them. By Thursday, I thought I had found the correct paperwork that they needed to fill out (or so I was told by one of Cigna’s customer service people), and because the staff at the doctor’s office kept claiming that they weren’t getting them on their fax machine, I printed it out at home and drove the thirty minutes to the office to hand-deliver it, only to be informed by an irritated medical assistant that this was not the correct form. I’m not sure that it wasn’t the correct form, but who was I to argue? I was also informed by her that it didn’t do any good to call every hour as that just slowed down their work and made it more difficult to deal with my request as they had other patients to deal with, blah, blah, blah. I told her that I would not have had to call so often if someone had just returned one of my phone calls so that would I have had some inkling that my request hadn’t fallen into a black hole. So, from the waiting room, I called Cigna again. Then, whomever I spoke to on the phone told me that, lo and behold, my request was marked for approval but that the doctor needed to submit the prescription to their pharmacy benefit provider along with the appropriate paper work. Apparently, this is because CGM supplies come under the heading of durable medical equipment (DME). To me, something that only last ten days doesn’t seem very durable, but again, who am I to argue? I left a note for the M.A. giving her the correct contact information. Next day, Friday, I follow up with the doctor’s office and the pharmacy benefit provider and find out that the doctor had submitted the prescription but that there’s more paperwork that they need to provide. I’ll have to follow up on Monday to see where that stands.
The good news is that on Friday afternoon, I did get a call from a nurse at the doctor’s office who informs me that the doctor is sorry for the delays and confusion (yeah, me too!) and that if I can come into the office they have a sensor that someone has donated that I can have. I drove to the office (again) and picked up the sensor, but I still haven’t put it on. Why? Cigna.
One of the main reasons I was so stressed about getting my sensors is that I have a PET scan scheduled for May 6th. In order for me to have the test, I’m not allowed to take insulin or have anything other than water six hours prior to arriving at the hospital. I’m also not allowed to have a blood glucose level higher than 220. If it goes above that, the scan will need to be rescheduled. Achieving this control is going to be tricky and I cannot imagine doing it without the CGM. Therefore, I have one sensor at this point, and I don’t want to waste it. At this point, Cigna has not approved me for more CGM equipment and they have also not approved me for the PET scan. I know that insurance companies don’t like to approve PET scans because they cost a lot more than CT scans but the PET scan is really the only way to see if the shadows on the CT scans are active tumors. I think that there’s a good chance that Cigna will eventually approve it if my doctor can make a good argument for it, but there’s also a chance that the scan could be delayed, in which case it could get pushed back beyond my one sensor’s ten-day expiration date. So I’m hoarding that sensor until I’m sure that either I am approved for more CGM equipment or my PET scan is approved and on schedule.
All of this is just adding to my stress level. Every time I get scan, I’m nervous beforehand. Patients refer to this as scanxiety. It’s common and expected because each scan reveals whether the cancer is progressing (getting worse) or responding to treatment. In the past, I was nervous, but I always felt that if it was progressing we could give the treatment more time or try a different treatment. Well, now I’m off treatment and I don’t really have a plan B because my various immune-related side effects would make me ineligible for most other treatments, even trials. The nivolumab was really my last best shot. So, yeah I’m very, very, nervous and that’s not helping my mental state or emotional state.
Let me just get it out of the way right now. I’m not happy with my care team today. In addition to having melanoma, and diabetes, and lately colitis, I’ve started having another issue. As you might recall from my previous posts, I have been dealing with my latest immunotherapy-related side effect, colitis. My oncologist put me on a tapering course of steroids and that seems to have the diarrhea under control. I’m currently about half-way through the course of treatment and (knock on wood), things are getting better on that front. If anything, I’ve gone in the other direction as my bowel movements are normal when I have them, but they’re infrequent. For now, I’ll take not often enough over much too often. I’m hoping that I go back to being a regular guy once the steroids are out of my system, which should be in about ten days.
The new issue I’m having is also bathroom-related. I find myself need to urinate just about every hour, day and night. Often I have the urge to go but not much comes out or I do go but I never feel that my bladder is completely empty. I’m not in pain, but it’s annoying as hell and I worry that it might be a sign of something serious. Or not. I’ve had an enlarged prostate for years, what they call BPH (benign prostate hyperplasia). It’s something that a lot of guys my age deal with and something that I’ve dealt with over the years. It’s a rare night that I don’t wake up for at least one bathroom visit, but this recent episode is much worse, some nights every hour. I’m not sure that diabetes or prednisone don’t make this condition worse. I’ve read conflicting things in my Google searches, and my oncologist and endocrinologist both suggest I see a urologist (more on that in a bit). Of course, it’s hard not to think of the worst, that my melanoma has spread to my kidneys or my bladder, or even that I have prostate cancer. I really don’t think that that is the case here, but the mind has a mind of its own when it comes to the unknown.
Backing up. The last time I saw my oncologist, he prescribed prednisone and had me make a follow-up appointment to see him in two weeks, just in case. He said that I could cancel the appointment if I felt better and didn’t feel the need to see him. I did feel better, diarrhea-wise, but I was feeling not so great urologically. I called them on Monday of this week, described my symptoms and the nurse said that they would arrange a referral with a urologist and get back to me. They said that I’d be more likely to get in sooner that I would be if I just called myself. Wednesday morning, today, I still hadn’t heard from them about the referral. This morning I called them to see if the doctor wanted me to keep the appointment, in light of my progress on one front and in light of the new symptoms. I got a quick call-back from another doctor’s nurse, who took all my information and said that someone would get back shortly. I explained that I need to hear back soon because both my wife and I would have to arrange time off of work if I was going to keep the appointment. While she was on the phone, she gave me the name of the urologist that they wanted me to see. This was all by 9:00 am. I go to work and wait for the phone call. Hours pass. I’m busy at work and I can’t get away for lunch or to step out to make phone calls. Finally, around 4:00 pm, I call the urologist that they “referred” me, too. Turns out that he doesn’t see patients with urinary hesitancy, which is I guess what was in my chart, but they could offer me an appointment with a P.A. in about a month. Argh!! I took the appointment, but I don’t plan on keeping it. If I need a urologist, I’ll find one that’s more local to me. Next, aggravated beyond words with the lack of response from my care team, I called and canceled my appointment for tomorrow. I never did hear from them and I don’t expect to.
I’m not sure what would be the benefit of keeping the appointment. I guess my oncologist is good at cancer, but when it comes to other issues, he isn’t overly knowledgeable or concerned. The knowledge part is OK, I don’t expect him to be an expert in every organ and system in the body, but the concerned part is starting to piss me off, if you’ll pardon that expression. I’m pretty sure he would have just ordered the standard labs and then referred my to some other ‘ologist.
This is the frustrating part, that they tell me to call them at the first sign of any symptoms because only they can manage my care. They don’t want me to see another doctor without going through them first and they don’t want me going to the ER at all unless it’s a life-or-death emergency. That’s what they tell me, but my experience has been the opposite of that, that calling them just adds delay when I’m likely to be referred to another specialist anyway. Well, I’ve accepted that this is the age of specialization and I’ll let my specialists specialize. And if I have an issue that needs prompt attention, I’m going to the ER or a walk-in clinic. The idea of coordinated care sound lovely, but I’ve realized that the only one who can truly coordinate my care is me.
In other news, I had hoped to have cute chick pics showing the chicks romping in their new coop. Very sadly, we decided to re-home the chicks. For a variety of reasons, we decided that this is not the time. That’s not to say there won’t be chicks in our future. We were both looking forward to welcoming new lives in our lives and giving us a pleasant distraction from all the melanoma crap. We haven’t given up the idea, but next time we’ll have their home set up before we bring them into our house and hearts.
I never liked rollercoasters yet I went on them many times and each time I tried to like them. Maybe it was for the adventure or maybe to show myself they really were as fun as people I knew had said. Maybe it was peer pressure or just plain stupidity on my part for choosing to go on a ride that I had never had a good experience on. Some people felt a rush, I only felt ebbing and flowing terror the whole time.
I’d get on them and once they started to move I’d wish I never got on. Then, up the first hill, not so bad. “I can maybe deal with this.” The car reaches the top, only for a second, but enough to know for sure that it’s going downhill quickly and there was no getting off the ride. I remember screaming all the way down and telling myself at the bottom that it was going to be ok. Just breathe and relax. Another slow uphill, the car chugging along and then whoosh down again each time trying to convince myself the ride was going to stop, all would be well and I could get off.
That’s what this journey has been like. This is one journey we don’t want to be on but we don’t have. a choice. When I think of a journey I think of adventure, spontaneity, growth and fun but this journey isn’t any of that. It’s been a wild ride. Too wild. One day things look pretty bleak and the next we are breathing and starting to relax a bit. Up and down constantly. Much like I felt on those rollercoasters years ago.
Right now, I’m thankful that we are on the uphill portion of the roller coaster. As it chugs along uphill I am reminded of the words to The Little Engine That Could. “I think I can, think I can” and I say something similar to myself “it’ll all be ok, it’ll all be ok.”
When on the rollercoaster one knows that there is always another quick downhill before it levels off. That’s how things have been so far but this time it’s going to level off. I’m not expecting any more downhills. Rich has dealt with enough so this coaster is being reengineered to stop at the top so we can get off and get on a ride that we want to be on.
On the rickety old wooden rollercoasters, every bump was felt and I was sure something was wrong and the track was going to break. That never happened. Just a bump and we kept moving. Rich has scans next month so I expect to feel a little bump where I wonder if something is wrong with the track but that’s just how scanxiety is and it will be ok. This coaster has to just keep going up and up. No more ups and downs. When it finally levels off we will get off, able to experience all the beautiful views from the top, and set off on a journey of our choice together.
As expected, it looks like I do have colitis and I am getting kicked off of Nivolumab treatment. The image on the left here represents my somewhat mixed thoughts. On the one hand, I feel like I have had my life preserver taken away; on the other hand, Nivolumab might be a sinking ship at this point, at least for me.
Let’s see. In November, I got hit with diabetes, which put me in the ICU for a day and a hospital bed for week. I also have elevated thyroid levels now. Although it’s not currently enough to treat, I have to wonder if some of what I’m dealing with might be related to that. Now, after eight treatments, I’m being treated for colitis. The doc didn’t run all the tests, but I did have grade 1 or 2 diarrhea (it depends on what day you were counting) and I did have leukocytes in my stool but no bacteria or parasites. It would take a scan or a ‘scope to definitively diagnose, but going by the duck test (if it walks like a duck, and quacks like a duck, it’s probably a duck), it’s being treated as colitis, which I have no reason to doubt that it is. Since being on put on prednisone three days ago, my diarrhea has stopped, as has everything else. I’ve never been one of those people who were obsessed with their bowel habits, but I’d really like to have a good, solid dump right now.
As stated above, my feelings about being taken off Nivolumab treatment are mixed. I expected that my treatment would be suspended while we dealt with this diarrhea/colitis issue, but I was hoping that it would only be a temporary suspension and that we could resume treatment once those issues were under control. From what I’ve read online, that seems to be the protocol at many cancer centers, at least for colitis presenting with grade 1 or 2 diarrhea. When the doc told me that I would be taken off of treatment completly, however, it was an emotional blow that I wasn’t quite prepared for. I just wanted to go home and take to bed, which I did for several hours after we returned home.
On the way to the clinic, Lynn asked me if I would want a treatment that day if the doc offered me the choice. I said, “of course.” I knew by her reaction that wouldn’t have been her choice to have a treatment before getting this latest side effect under control, but I was still seeing Nivolumab as my life preserver. Until the colitis, I felt good and my cancer had not progressed in months. I was willing to accept the “get diabetes, get rid of melanoma” trade, and I was even willing to accept losing my thyroid function. I was thinking that this diarrhea/colitis was just another bump in the road, but after researching it and thinking about it, I’m seeing it as more as leaving the highway and heading out onto an unpaved, uncharted, and dangerous road. Colitis can get nasty. Some people get it and never get rid of it, and have to continue on more and more aggressive treatments and eventually have to have part of their intestines removed. And some die. That is some double-edged life preserver.
I’ll find out more next month when I return to Smilow for scans. I’m to get another MRI on my brain to see if anything is growing there and a PET scan for my chest and abdomen. The PET scan will be my first and it will show where there is any active cancer in my body. With the CT scans, all they can really see are shadows, and they judge progress by whether the shadows are getting bigger or smaller and whether they see new shadows that they haven’t seen before. The PET scan allows them to see if those shadows are active tumors, or possibly scarring from previous disease or necrosis. Apparently, active tumors “light up” on PET scans. I’m looking forward to a total blackout.
If the scans don’t turn up anything new or active, then the plan is that I will just continue to get scans every three months for 6 months to a year, then less frequently after that. If they do show active cancer, I’m not sure what my options are. I don’t seem to have the gene mutations that would make me a candidate for targeted therapy, and I’m pretty sure that my previous immunotherapy-related reactions would disqualify me for most trials, even if there were something promising on the horizon, which I don’t think there is. My doc seemed pretty definitive that going back on Nivolumab treatment would not be an option even if I did get the colitis under control, at least not one that he would approve. I could shop around for another center that might approve, but would I want the Nivolumab even if I could get it? I honestly don’t know right now and I don’t think I can answer that question until after those next, dreaded/anticipated scans.
It’s funny how my outlook has gone back and forth since my diagnosis. When I was first diagnosed with stage IV last July, I wasn’t sure if I would make it to Christmas, or even my next birthday (September). Then after a few good scans, I began to think that I might be one of the lucky ones, the survivors who battle on for years and years. Now, I’m back to thinking much more short-term. I don’t know if I have years or months. I’ve learned that one bad side effect could take me out in just a few days. Right now, the weather is finally starting to feel more spring-like and I’m looking forward to enjoying the days ahead, if we can just get past all this chicken-shit.
Speaking of chickens, the chicks are getting bigger and showing their individual personalities. We’re having an Eglu coop/run delivered next week, so the hope is that they can go out in it in the evening for a few hours so that they can get used to being chickens and scratch in the dirt, and then later when they are fully feathered, they can move to their new home full-time. More cute chick-pics to come.
This post is more of a rant than anything else. I just need to get some stuff out and by writing it I’m hoping I will help get it off my chest. Also, if anyone else, who feels similar, happens to read this they will know they aren’t alone in their feelings of helplessness at watching someone they love suffer. I try not to just toss everything out because I don’t want Rich to worry but he wanted this blog to show both sides so here is my side of today’s news. (Rich, when you read this, please don’t worry. I’m frustrated but fine. I love you). I try to stay positive and I try to see the silver lining. Some days that’s easier than others and today has not been one of those easy days. It’s days like these that I ask myself “why”.
We went to Yale today and they are now treating Rich with a high dose of steroids for colitis. He has been taken off Nivolumab. A PET scan is scheduled for the beginning of May to see if there are any active tumors so we will know more at that time but we are hoping for a clear scan because as of now there isn’t anything else for him to try. He is BRAF 600 negative so targeted therapy is out. Also, we are hoping that the steroid dose he was put on today will help with the colitis without causing more issues with his diabetes.
The steroids make his glucose spike and no one seems to know how to manage his diabetes. He’s been trying to figure it out by himself since November and has had trouble. Steroids make it much harder. He doesn’t know how much insulin to give himself and how much to eat while on the steroids. He has to be on them for a month. There are few foods he has left to eat because the combination of diabetes and colitis takes away the ability to eat most food groups. Avoid fiber and dairy with colitis, eat a bland diet but avoid carbs because those raise his sugar. He has melanoma, diabetes and colitis and he can’t even eat what he wants and when he wants anymore. Such a simple thing that is usually taken for granted until you can’t just have a meal when you want to and other times you are forcing glucose tabs down when you don’t want to. Being able to eat what and when you want to is a huge part of life.
And of course, being taken off the immunotherapy and not having a plan B is sooo scary that I can hardly even process that information fully right now so I’m going to try to stay positive that that PET scan comes back clear. I guess that’s about all the positivity I can hold on to today. At least it’s a little bit.
I guess it is normal for people to ask themselves “why”. “Why did this have to happen?” “Why did it happen to Rich?” There are times that I want to scream that at the top of my lungs in hopes of hearing an answer. I want to know why because if I know that maybe I could come up with a plan to fix it but the reality is that I know there isn’t an answer. There just is no reason why such a wonderful person would have to go through all of this. It doesn’t make sense and life seems so unfair. No matter how I try to see it from a different angle I just can’t. It’s unfair and it sucks and I can’t fix this for Rich and I hate the fact that I can’t.
Well, I got the test results back from last weekend’s fecal adventures. Turns out that it’s not bacterial and its not a parasite, but I am positive for leukocytes. Without a CT scan or colonoscopy, it’s not 100% positive, but as it looks now, it’s likely that I have Crohn’s disease or colitis. At least that’s how my oncologist is treating it. He prescribed prednisolone, an oral steroid, which I have been taking since two days ago. The results so far have been mixed.
From having about 4-5 episodes before starting the steroid treatment, I went down to no bowel movements of any kind the day after (yesterday). I was feeling pretty good, and pretty cocky, so I went into work today for the first time in almost two weeks. I was doing OK until after lunch. Maybe it was the coffee I had this morning. I know I should avoid caffeine, but I couldn’t handle the decaf and I figured one cup wouldn’t hurt me. Well, shortly after lunchtime (I didn’t actually eat lunch), I could feel rumblings in my innards, which I hoped were just things settling down there. Nope. Just before leaving for the day. I felt an urgent call and heeded it. More diarrhea. I managed to make it home, and then, much more of the same. Aw, shit! I guess I don’t have this, whatever it is, licked so easily.
Did you know that steroids can mess up your blood sugar? It can make it go sky high, and for a diabetic that’s another challenge to deal with. I’ve been doing well managing my glucose level until now. As soon as I took the steroids, my blood glucose shot through the roof and I’m having a hard time managing it. I’ve doubled and tripled my insulin and cut way back on my carb intake and I’m just barely managing. Right now it’s OK, but probably because I’ve hardly eaten anything all day so far. If I eat anything, up she goes. I hope that I only have to take these steroids for a for a few more days, but if the diarrhea doesn’t quiet down, I may be switched to something stronger.
I’m scheduled for another infusion tomorrow, but it seems unlikely that I’ll be getting it. Prednisolone suppresses the immune system and Nivolumab stimulates it, so it doesn’t seem like you’d want to take the two together. Also, if what I have is an immune reaction, I may be taken off treatment altogether. That is a big worry. I still have that pesky melanoma to deal with and I don’t want to be deprived of my best weapon against it.
I’ll find out more tomorrow when I go to Yale and meet with my doctor to discuss. Right now, I’m feeling like this is a set-back. Hope it’s just temporary.
Warning: the following post contains references to poop, poop, and more poop. That’s just the kind of week that it was.
I usually try to keep my posts here on the lighter side because I try to stay positive, and even when I’m not feeling positive, I try to look for the positive because that sometimes helps me feel positive. This week, I’m having a hard time finding the positive. This last Sunday I woke up feeling fatigued (I have to remember to say fatigued instead of tired, as Lynn reminds me, when I mean weak and listless instead of just sleepy). I attributed that to stress or maybe a side effect of Nivolumab, as I sometimes have days now when I feel weak and listless, but thankfully those are few. I took a nap and later that day I felt OK, so I didn’t think anything more of it. Monday morning I woke up and I had diarrhea. It wasn’t the kind of mad-dash-to the-toilet diarrhea, but when I sat down to heed nature’s call, my butt-hole became a faucet of liquid poopiness. Not a big deal, unpleasant and inconvenient, but one of those things that can happen from time to time for a variety of reasons. As I said, not normally a big deal, except when you are taking immunotherapy drugs. Immunotherapy drugs can cause many different side effects, including Type 1 Diabetes, which I now have as a result of Nivolumab treatment. Another, and more common, side effect is colitis. Colitis, if not caught early, can be serious and life-threatening, which is why patients on immunotherapy and their doctors are on the lookout for early signs such as diarrhea.
I didn’t call the doctor right away because it wasn’t that severe at first. Diarrhea, like just about everything else I’m dealing with, has different grades. I won’t bore you with the specifics, but at this point, I was at Grade 1. If you’d like to learn more about diarrhea and grading, I refer you to the following page:
I waited until Wednesday morning to call my care team at Smilow Cancer Hospital in New Haven. I have a card that I carry in my wallet, and on that card is a phone number for the melanoma clinic there. When you call that number, an answering service takes your message and you then wait for a call-back. When you get the call-back, you give your information to a nurse and then the nurse tells you that she will speak with the doctor and get back to you. Several hours later that day, the nurse calls back and tells you what the doctor advises. This appears to be the standard protocol. It was the same way when I was being treated at Dana Farber in Boston. The doctor’s advise was to watch and wait, and to call back immediately if things got worse or to check back on Friday if things did not get better.
So I watched and I waited. While I was watching an waiting, I continued to have liquid poops. I also lost my appetite and was had to force myself to eat. Eating was doubly difficult because I also have diabetes. When people get diarrhea, they are told to eat bland foods and eat the BRAT diet. BRAT stands for bananas, rice, apple sauce. and toast. These are all high-carbohydrate foods that diabetics need to limit or avoid. People with diarrhea are also told to avoid raw vegetables, most fruits, dairy and fiber, and other things such as caffeine and alcohol. This doesn’t really leave much except for things like clear broths and water. Lots of water is important because you don’t want to get dehydrated. It’s hard to keep your weight up on that kind of diet and I lost seven pounds this week, so I now weigh about 20-25 pounds less than I did before I was diagnosed at Stage IV last July. As I told Lynn, I feel like I’m disappearing out my asshole.
I continued to watch and wait until Friday and that’s when I really began to question my medical care. By Friday, I was not only not better, but I was probably up to stage 2 diarrhea at this point. I called my care team around 8:30 Friday morning, and after the usual leave a message, get a call-back, talk to the nurse, nurse talks to the doctor, nurse calls back song-and-dance, I hear back around 2 pm and they tell me to go to local lab to do a stool sample for testing. So, I drive to the lab, but the lab does not have the lab orders from Smilow. We (the lab tech and I) call my care team, leave a message, get a call-back, and the nurse tells the tech over the phone what kind of lab test they want and that they’ll fax the order immediately. I wait there, and wait, until the lab tech tells me that I can go home with the kit and bring it back in the morning by which time they should have the lab order. Next morning. Saturday. I shat in the hat (this adventure would make a great Dr. Seuss book), collected my soupy sample and drove to the lab to drop it off.
Surprise! The lab still didn’t have the lab order, so they sadly cannot accept my offering. I call my care team, get the answering service, leave a message, wait for a call-back, don’t get a call back after 40 minutes, call the answering service, leave another message, and finally get a call-back, but by this time the lab has closed. Argh. I tell the nurse on the phone where I’m at and what I need and she tells me that she’ll look for a lab in my area and call me back. I wait for the call-back, don’t get the call-back, so I call my care team again, leave another message, and then get a call back from the nurse.
Excuse me here, I have to go poop. BRB.
So where was I? Oh yeah, call back from the nurse. She said that she couldn’t find a lab because she wasn’t sure what towns were close to where I was. She was also confused about whether I was in Plainfield or Plainville. I was in Plainfield, but anyway, we finally decide that I will take my poor poop to Smilow itself, which at this point is an hour and thirty minutes from where I’m at, not counting a stop at home to pick up Lynn. And to poop. At the end of this ordeal, Lynn and I drive to Smilow, find our way to the 7th floor and give the nurse my parcel of poop. She says that they’ll start processing it immediately but that it may take a few days for all the labs to come in. Finally, we head back home where I take a long, exhausted nap.
I didn’t count how many times I used the phrase my care team in this post, but that’s what they want me to think of them as. My care team includes my doctor, the nurses on his staff, and all the techs and support professionals that make hospitals run. However, I’ve been thinking a lot about that word care today. How much do they care and what do they care about? I could write another blog post on that subject but let’s leave it for now that I have to ask myself that question. I felt this week that I actually got worse care because I had cancer than if I didn’t. If I did not have cancer and had diarrhea, I would call my primary and he/she would tell me to try some over-the-counter remedy such as Imodium, or maybe they would order some lab work. I think that is what my care team should have done when I called on Wednesday, instead of waiting another two days for things to get worse. If this were colitis, getting it treated early can literally make the difference between life and death. I don’t think it is colitis, but they don’t know that. As it is now, it may be well into the next week before I know what’s going on with my gastrointestinal issues. If then. I’m trying to see things from their point of view, but I can’t. I can’t if they really care about patients and care about providing patient care.
So that was my shitty week. I could rant and scream to the heavens about medical bureaucracy, seeming indifference, confusion and incompetence, but instead I’ll just dump it all here.
I have a lot of respect for people within the medical community who have knowledge and expertise in their field; however, there is something else that I believe is quite valuable to patients. That is genuine empathy. I have worked in the medical field and I understand that it isn’t a good thing to get too attached to patients or doctors and nurses and other medical staff would probably lay awake every night worrying about the patients they have seen. It is a balance but it is possible to be attached while in a medical setting and not so close it takes over your life outside of work. Clinical empathy is a must but that isn’t the same as real genuine empathy and it seems that many times people in the medical community lean toward clinical detachment instead.
It is ok to feel and to show genuine empathy to a patient. I once had a hairy chested man ask me why I was cringing when it was his chest that I was pulling the EKG pads off of. I felt silly (I didn’t even know I was making a face but I knew it was going to hurt) but we both had a good laugh about it and he knew I cared and didn’t want him to feel pain. I took in patients that were angry and stressed, they felt that their symptoms were being ignored. Just listening and letting them know I believed them helped them so much. I didn’t always understand their exact pain but I knew they weren’t feeling cared for emotionally. In the office things were always hurried, there were other patients to be taken in and I didn’t want to keep a doctor waiting but I always found time to do my best to at least let them know I saw them as more than their symptoms. Patients lives matter. Patients are human beings. People in the medical community are also human beings and I believe that many of them do feel for their patients but it’s so ingrained to be sure to stay a bit detached that these people have forgotten what it is to show genuine empathy.
In school people are taught what to do to show a patient that you care but in my opinion if you shouldn’t even go into the medical field unless you care about people to begin with but that’s probably best saved for another post. For now I will try to stick to what originally prompted me to write this one.
Rich hasn’t been feeling well for almost a week. He’s lost 7 pounds already and we were told today to wait another 72 hours for a lab test to be completed. I’m afraid he may become so dehydrated he’ll end up in the hospital before then. He’s upset and angry and so am I. He called the doctor on Wednesday (after waiting two days to see if it was just a “bug”). They said call back on Friday if it got worse so here we are now, on Saturday, getting a test done, that could have been done on Wednesday, waiting another 72 hours.
What hurts me the most in all of it is that Rich feels no one really cares that he may be having a side effect to the immunotherapy he is on. The people he’s talked with and the nurse today have been pleasant but the fact that he feels that they don’t care then clearly genuine empathy has not been shown. To be clear, I’m not saying that I believe they lack empathy but what I am saying is that it wasn’t expressed in a way that left Rich feeling cared about. I have similar feelings about it and I have spent most of the day trying to put myself in the shoes of these people to try to understand why things are the way they are.
It’s proven that patients get well more quickly when they feel people care. Patients become more patient, staff and medical practitioners don’t have angry patients taking their frustrations out on them. Genuine empathy helps patients as much, or maybe even more, than medicine yet it’s hard to come by when you are a patient and I wish there was a way to change that but I don’t know how.
In the case of this week with Rich I’ve been thinking about how things could have been done differently. We may still have had to wait 72 hours but what would have made us feel differently than we do right now? First, when he called about the issue on Wednesday if they listened maybe they could have ordered the test that day or at least explain why they said “call back Friday if it’s worse”. What was the purpose of the wait and see approach when it had already gone on for 2 days. The lab didn’t get the order from the doctor and they closed before Rich got a call back from the doctor. I understand people want to go home but maybe even telling him labs that would still be open? Anything just so he felt understood and had another plan of action. When we did go to hospital lab and we were told to wait 72 hours the nurse did explain it takes that long for the test but there was no empathy expressed when I told her how Rich was losing a lot of weight and how tired he is. I didn’t expect her to gush but I wished she wasn’t so blasé about the whole thing. She just said “well if he gets a fever go to the ER”. Perhaps even a simple statement saying “sorry, this has been a rough week for you. We are doing all we can right now. I wish it could be done more quickly too”. Anything other than “if it gets worse call or go to the ER or as the lab said “we will be closing at 11”.
I’m very worried about Rich but I’m just as angry about the way this has been handled and the way he has been treated. He has cancer but he is a human being and he (and all other patients) should be treated as such.
The medical field needs to change. Detachment isn’t really an option if you really want to help patients (which I’d like to believe that most people do). Genuine empathy (not just clinical empathy) needs to be shown because no matter how awful a patients symptoms are it hurts even more to deal with a medical community where you don’t feel they really care about you. Genuine empathy is all it takes and there needs to be more of it.
Welcome to To the Moon and Back, a shared diary of one couple’s journey with melanoma. This diary will show both perspectives of the journey, Rich’s perspective as the husband/patient and Lynn’s perspective as the wife/caregiver. We hope that what we share will be of interest to other couples who have embarked on similar unplanned journeys, whether it be melanoma, other cancers, or any serious illness.
