To the Moon and Back

Bewildered, Bewildered,
You have no complaint
You are what you are and you ain’t what you ain’t
So listen up Buster, and listen up good
Stop wishing for bad luck and knocking on wood

John Prine, “Dear Abby”

OK, as much as I love John Prine, this post isn’t just an excuse to quote him. I haven’t been wishing for bad luck, but I have been knocking on wood lately. Well, since my diagnosis anyway, if not long before that. Yesterday, we went to Yale so I could get infusion #7 of nivolumab, but also so we could meet with my oncologist and get the results of my scans. Last Friday, I had an MRI of my brain and CT scans of my chest, abdomen and pelvis. It was a long six days waiting to get the results. Based on the way I felt, I was optimistic about what the scans would find, but you never know, you know?

Anyway, the news was good. Very good. While there was no reduction in tumor size, there was no growth and no new mets. This is called stable disease. At this point, they can’t be sure if the remaining shadows they now see on my scans are dead tumors, cysts, scarring or something else besides active melanoma. The assumption is that, if the cancer is active, it will either keep growing, or keep shrinking as the immunotherapy continues to fight it. This lack of change since my previous scan qualifies as three months of stable disease. The oncologist said that, if I my disease is stable after 12 months, he would order a PET scan to look for active melanoma cells. If the PET scan looks good, he would recommend discontinuing treatment and just doing scans to monitor me after that. No more booster juice.

There’s a lot of debate about when to discontinue treatment with immunotherapy drugs, with some experts suggesting stopping after the disease has been stable for 6-12 months and others opting to treat until there is either complete remission or until toxicity forces the patient off treatment. Some even suggest treating indefinitely, even after complete remission for as long as the patient can tolerate it. The thing is, these immunotherapies are still relatively new and there is not a lot of data from controlled trials to help determine which course is the best. Right now, we are all guinea pigs until they get enough data to determine an accepted standard of care.

This leaves me, like a lot of immunotherapy patients, with extremely mixed feelings. On the one hand, I look forward to a day when I no longer have to take this medicine. There is evidence that toxicity for these drugs is cumulative. In other words, the longer you are on it, the more side effects you can get. I’ve already had pancreas damage leading to Type 1 Diabetes, and my TSH levels are rising, indicating that my thyroid might also be on the way out. Not having to get my monthly infusion and not risking more side effects sounds very appealing. On the other hand, this drug, this booster juice, as Lynn calls it, is my lifeline. I’m not sure that I would even be here typing these words without it, so the idea of giving it up while I still have those shadows lurking in my body is more than a little bit scary. If the drug is working now, why give the bastard melanoma a chance to gain another toehold?

I know I’m getting ahead of myself. We’re at least three scans away from needing to make that decision and there is a lot that can happen between now and then. I don’t know now what I would want to do at that point, but at some point I have to trust my expert, especially when he comes bearing good news. After where I was and how I felt when I was originally diagnosed stage IV, I’m very happy and very grateful to be given a second chance at life.

As Dear Abby might have said, what’s the point of knocking on wood?

One of the things I struggled with when we started this blog was how much to share. I’d like to share what’s really going on with my melanoma journey so that others could learn from it, or at least relate to it. On the other hand, I don’t want to get too specific about the medical stuff because, well, it might be more detail than most people would want. What to do? Well, I guess I’ll take things one step at a time and today’s post will err on the side of sharing. You’ve been warned.

There are many side effects that can come with immunotherapy treatment. For Opdivo, I have a glossy pamphlet put out by the drug company listing them. Actually, it mostly just lists the symptoms and you’re supposed to contact your doctor if you have any of those symptoms. I guess you’re supposed to infer the side effect from the symptoms.

For instance, two of the symptoms in the hormone gland category are increased thirst and frequent urination. The pamphlet doesn’t mention diabetes, but those were my symptoms and that’s what I got.

Another symptom under the hormone gland category is constipation. I don’t know which of the hormone glands regulate pooping. The pamphlet doesn’t say, but I should probably find out because that’s what I got. The thing about constipation, however, is that it can be caused by a lot of things, including diabetes (check!) and changes in diet (also check). I’ve mentioned this symptom to both my old and new oncologist as well as my PCP and none of them seemed overly surprised or concerned. The standard recommendation was to try an OTC stool softener.

Now, constipation is defined as less than three bowel movements in a week, so roughly less than one every two or three days. Prior to today, it had been six days for me. I know this because I have been keeping a log. I call it my Dump Log. I just record the date and time, nothing more. I don’t record the amount (which is usually substantial) or the effort required to achieve it (also substantial).

Oh, and speaking of effort, I have an inguinal hernia, which makes straining difficult. I have to hold it in with one hand while sometimes pushing so hard I fear that I might pass out. TMI yet? Well, sometimes I’ve had to resort to other measures, and those details I will spare you.

At first, I tried fiber pills (psyllium husk) thinking fiber was more natural, but that was a mistake. Too much bulk. I stopped those pills and then started the stool softener as my doctors recommended. I don’t know if they had any influence but I finally had a successful launch today. So all’s good on that end, for now.

I mention all this not to gross you out, but just to give you an idea of what kind of day to day crap goes along with this journey. So far, in spite of the diabetes and the other stuff, I still feel fortunate because I’m still able to live my life somewhat normally. It’s just that, even when things are going well, shit happens.

Or doesn’t.

Rich has been going to Boston for his treatments and while we liked the doctor and nurses in Boston, we decided that going to Yale would work out better for us. His treatment is staying the same so the decision was based mostly on distance because that was becoming an issue. Yale is much closer so if Rich has a side effect we won’t have to drive as far. Also, though we hope it doesn’t happen, if he ever has to be in the hospital as he was when he got diabetes, it will be much closer to home. Only a little over an hour vs close to 3 hours with traffic to Boston. Yale also has a walk in clinic in case there are any issues and Rich needs to see a doctor outside of office hours so that appealed to us as well.

We just met with the people at Yale last week. The doctor there answered all of our questions and was upfront about things. We both liked him and we liked the nurses on his team as well. Rich will be having his scans there this Friday (February 1st) and his first treatment there will be on February 7th. On treatment day we will be told how the MRI and CT scan look. Keeping positive while also trying to keep the anxiety at bay.

In some ways, I will miss going to Boston. I’ll miss the doctors (both the radiation oncologist and his regular oncologist. Both of them were always very patient and took time to answer anything I asked (and I asked a lot of questions). I’ll also miss the infusion nurses. Rich has had 6 treatments there and we had seen the same people almost every time. Sounds strange but in that time frame I felt like they understood where I’m at better than some of the people who have known me for years do.

All in all, I think Yale being a closer to home will reduce some of the stress. Sitting in Boston traffic can be maddening and since the treatment is the same in both places it just makes sense to go closer to home.

Have you ever heard the expression, “don’t change horses in the middle of the stream?” Well, that’s what we’re doing. After six months of treatment, we’ve decided to change where I get my treatment, switching from Dana Farber in Boston to Smilow in New Haven. Smilow is about an hour or more (depending on traffic) closer to where we live than DFCI. We were very satisfied with the care we received in Boston, but logistically, it became difficult, as I began having side effects from treatment, to be dependent on care that was that far from home. I’m going to miss the doctors, nurses, and other professionals there. I thought that they were almost uniformly highly knowledgeable and extremely caring. I know that they are paid professionals doing their jobs, but I will miss them. I will not, however, miss the commute.

So now we’re at Smilow Cancer Center at Yale New Haven Hospital. We met with the oncologist who will be overseeing my treatment. We scheduled scans of my brain, chest, abdomen and pelvis, and we scheduled my next immunotherapy treatment, which will be my seventh. So far, nothing is changing, as this doctor is recommending the same course of treatment as my old doctor. Same stream, new horse.

A funny thing, or at least an interesting thing, happened while we were seeing the doctor. Dr. Sznol, after having reviewed my scans and other tests from Dana Farber, told us that he agreed with their treatment plan and also, most importantly, that he felt that I was a “responder.” In other words, the tumors in my body are responding to treatment (i.e getting smaller) and that there is, in his opinion, a very strong chance that I will achieve a complete response in six months to a year. This is excellent news by any standard.

Lynn was very excited by this news, but she was surprised by my reaction. I did not get excited right away because I had to think it over a bit in my head. Now, this Dr. Sznol is a big guy in his field, well known, well respected, but here I was taking in his words with more than a grain of salt for no particularly good reason. First, in my mind, the data hadn’t really changed. Except for some blood work I had done that day, he was basing his opinion on tests and scans that I already knew about. Second, I’m now scheduled for scans in two weeks, and newer scans will always give the most accurate picture of what’s going on inside my body, and that’s always going to be the case until I stop needing scans. Third, I was getting over a nasty cold and I didn’t feel that great. It’s hard to feel like your body is healing when you feel like crap. Still, here was this noted oncologist giving me this great news and I’m, if you’ll pardon another horse metaphor, looking this gift horse in the mouth and counting its teeth. I don’t know why Lynn puts up with me.

As I’ve had some time to think it over and let things sink in, I am feeling pretty good about things. I think its just my nature to not get too excited over things for fear of being disappointed later. I see that I need to get over that. I still don’t know how long I have left (which is a good thing), but while I’m alive I want to experience joy. The first step to experiencing joy is to give myself permission to feel it.

Rich scheduled his next scans for the beginning of February. His next treatment is on the 7th so we will find out then how things are then. Keeping my fingers crossed the report is the same (or better)than the last. Last time the tumors remained stable or shrunk.

What really is worrisome to me is the immunotherapy itself. Yes, the cancer is quite scary too but never knowing when a side effect could come is a difficult thing. I don’t want to jump to conclusions every time Rich has a pain but I can’t help but worry about whether he’s having a side effect or if it’s just a normal pain. It seems we never know whether or not to call. We didn’t call right away when he got diabetes (things went from bad to worse quite quickly. He was tired on Friday night and by Monday he had lost 12 pounds and was admitted to the ICU). Another time, we did call when his leg was swollen and it turned out to be nothing. He had a major headache last week and threw up (which is really rare for him) so I didn’t go to work and it turned out to be nothing. Later in the day he had a cold. Just a normal cold people get several times in their life. I was glad that we didn’t rush to call. (Though I did get at myself for worrying so much and I felt a bit like the boy who cried wolf with my job). The side effects of the immunotherapy scare me but I am glad it’s working. I just wish I knew what was a normal pain and what wasn’t.

If anyone comes across this blog and wants to share how they decide if they should call or not for a side effect, please feel free to comment. I’m sure I’m not the only one out there who wonders about this.

When Rich suggested that we both write, on one site, about our journey with melanoma I had to think about it for a little while. I’m looking forward to it but I’m still a I’m still a little unsure where this will take us. When he was diagnosed with stage 4 melanoma, on that afternoon in August of 2018, both of our lives were instantly affected but somehow it feels selfish to talk about my side of this when Rich is the one who has melanoma. Also, I tend to write from my heart and one of my concerns was that I would have to censor my writing if we were both sharing our thoughts publicly. If that were to happen then that would not be keeping things real for those who are reading.

After talking with Rich about my concerns, I realized that Rich was right. I have read stories written by patients and I have read stories written by their loved ones but I have never read two sides of the same journey. My story is very different from Rich’s yet we are on this journey together. I’m doing this with him because in doing so our stories can come together and others can see the whole journey.

I don’t know how many times we will go to the moon and back but I do know that we will be traveling together the entire way. My love for Rich extends on and on forever. I love him to the moon and back and I would do anything for him not to have to go through this. One thing I do know is that wherever his story goes mine will be right beside it.

I’ve currently been on treatment for six months. In that time, I’ve had good response in that, according to my most recent scans, my tumors have either shrunk or remained the same size, and no new tumors have popped up. Those most recent scans were in November and my next scans are scheduled for February. In the meantime, all I have to go on to determine the state of my cancer is how I feel and the lab work that I get before each monthly infusion. The lab work doesn’t tell me much about my cancer, it’s mostly to determine if I’m having side effects such as elevated liver enzymes or thyroid issues — side effects that might cause my treatment to be stopped, or at least suspended. So far, my lab results have been good, except for an immune reaction which caused me to have diabetes and end up in intensive care, but that’s a topic for a another post. As for my health, that’s where the waiting and worrying really come in to play.

I have some other health issues besides cancer. I’ve had asthma since I was a kid, but that’s well controlled. I also have a hernia, which I’ve had for a couple of years, and am dealing with it by hoping it doesn’t get worse. And cataracts, which aren’t so bad that I can’t drive, but I’ve put off correcting them because, well, I’ve got enough on my plate right now. Oh, and now I have type 1 diabetes, which I have to deal with by watching my diet and taking insulin. Just a couple of years ago, my medical team was my PCP. Now my medical team could fill a Rolodex. Is Rolodex still around?

Back to the waiting and worrying. I’m 62 years old. I expect the usual aches and pains that come with my age. What I don’t know, however, is if these aches, pains, or other abnormalities are side effect, symptoms or just something I would have just shrugged of before all this happened.

Here’s an example from today: Prior to last summer, my normal weight was between 150 and 155 lbs. After the diagnosis, and particularly, after my stint in the ICU in November, it was down to 135 lbs. I’m 5’11” tall, so I’ve always been thin, but now I’m in the area of dangerously thin. I really don’t have much left to lose. I was able to raise my weight to close to 140, but recently it has dropped again down to 136, according to my bathroom scale. I’m actively trying to gain weight, but it’s hard, because I also have to watch my carb intake due to the diabetes. I think I’m eating a lot, but apparently, not enough to put the pounds back on, which is frustrating. I don’t know whether my inability to gain weight is due to my cancer, the medicine that I’m taking for my cancer, my diabetes, or something else. I’ve looked up cachexia, which is a wasting away of muscle and stored fat due to cancer or some other serious disease. I don’t think I have it, but the fact that I’ve looked it up should tell you where my head is at.

I don’t tell Lynn everything I’m thinking, because I don’t want her to worry more than she already does. Oddly, she was always the worrier in the family. My attitude was always to not worry and hope for the best. Now, I feel like I’m the worrier, but that could be because she’s not telling me everything she’s worried about because she doesn’t want me to worry. It seems like we’re often on a worrier’s seesaw, where one us gets down and the other one has to be up to support the one who’s down. It doesn’t work if we’re both down at the same time, although that has happened, too. What has been extremely rare, is for both of us to be up at the same time.