In Loving Memory

I am Charlie’s sister Cheryl. Charlie stated in his last blog post on February 21st that he and his wife Pat had made the decision to enter hospice care. I was there with him when he made that decision. I was there when the admitting nurse came that same afternoon, and when a hospital bed was delivered that evening, and when his care nurse came the next morning. But then I had to return home to my husband in Oklahoma, as I’d already been away from home for a week. I said my goodbyes on February 22nd and told him I loved him. I stayed in close contact with Pat, and learned that he died peacefully early in the morning of February 24th. Pat was with him at the end, as she had been throughout this illness and through the last 37 years of his life.

 

Anyone who has been reading this blog over the course of his treatments will know that Charlie faced his illness with great courage. He remained hopeful and optimistic throughout his long ordeal. But then, that is the way he lived his entire life. He kept his concern and compassion for others to the very end. To give just one example of this, February 21st was a particularly bad day for Charlie. He was quite weak, and he’d thrown up what little food he’d been able to eat. Pat had gone to get some supplies recommended by the hospice nurse. He decided he wanted to clean up a bit. He didn’t need much help from me, but I stayed close just in case. After he finished whatever cleaning up he was able to do, he was sitting on the bench at the foot of his bed. He looked up at me and said, “This must be really tough on you. First Billie [our mother, who died in 2013], and now me.” At that moment, in spite of all he was going through, he was more concerned for me than he was for himself.

 

Charlie told me early in my last visit that Lou Gehrig’s farewell speech really resonated with him. Lou Gehrig had said, “Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.” Charlie considered himself to be one of the luckiest men on the face of the earth as well.

 

I have just returned from another visit, this time to be with Pat. Originally, Charlie was hoping to have a Pre-retirement party. This is what he wrote on the invitation that he and Pat sent out before they decided to cancel because of his health:

 

“Pre-Retirement Party”? I am not retiring yet, but because of a recent decline in my health, I think that time is probably sooner rather than later. So before it got too late, I wanted to hold a celebration to thank all of the people who have supported me so much over the last years.

 

Sadly, instead of a Pre-Retirement Party, it turned into his memorial, a Celebration of Life. The memorial party, because it was a party and celebration of Charlie’s life, was a very beautiful and moving afternoon. There were over forty people attending from the many areas of Charlie’s life. Those included a group from his employer, where he worked for many years. They brought with them a large packet of heartfelt messages of condolence that they wrote at their recent conference. They also brought an award for Charlie that he had been told about before his death.

 

In addition, there were many friends attending, going all the way back to his college days, up to the present in Southern California, and family members from both Charlie’s and Pat’s families. Pat and I were very appreciative and moved to hear all the kind words about Charlie, the impact he had on so many lives, and the beautiful expressions of sympathy. Pat is so very grateful for the wonderful kindness and encouragement she received through all the years of Charlie’s illness and death.  She plans to acknowledge everyone individually in the coming weeks.

 

Charlie always knew that once he died, it would be over for him, but not for those of us left behind to grieve his loss. We’ll miss you Charlie!

Chemo from hell

Warning: the following post contains a fair amount of blood and other graphic medical details!

My last post brought us up to date through just before my last chemo (Chemo 2, session #2). I had that infusion on January 25th, and for about two weeks all seemed to be going well. Then on February 9th I started seeing large amounts of blood in my urine. Even worse, by late afternoon I realized that I had not been able to urinate all day. Dr. N advised me to go immediately to the emergency room, and thus began probably the most painful 24 hours of my life.

I was sitting in the ER waiting room for about 20-30 minutes when one of the triage nurses took pity and told them to take me back for treatment, which consisted of inserting a catheter so I could finally empty my bladder. That provided me with instant relief – but unfortunately not lasting relief. After a couple of hours, the catheter started being blocked by the same blood clots that were earlier blocking my urethra . . .

Friday they took me down to the OR to perform a cystoscopy. Under a general anesthetic (whew!), the urologist inserted a larger catheter that could both view the inside of my bladder, cut out anything that didn’t belong, and cauterize the wounds.

That relieved most of my symptoms, but we also learned 3 pieces of disturbing information:

  1. During a CT scan on Thursday, they found likely metastasis into my liver.
  2. The urologist removed a pretty large tumor from the bladder. We had already known the prostate cancer was beginning to spread into the bladder, but this seemed to be a pretty rapid growth.
  3. Meanwhile, the urologist suggested that the next areas to be affected would be the small tubes that carry urine from the kidneys to the bladder. Once those get blocked, I would need to have an external urine collection bag installed.

I remained in the hospital until Wednesday while they monitored my recovery and my wife and I consulted regularly with Dr. N (who came by to visit every morning), and it had become increasingly clear that we were approaching the end stage of this cancer. Obviously one concern was with the prognosis discovered on Thursday and Friday, but I think even more important is the fact that I have been continuing to be weaker and more fatigued, even on a daily basis.

As Dr. N observed, even if Dr. Q were to come up with some new, promising (and experimental) treatment, it is extremely doubtful that my body could handle the additional stress of a new chemo treatment.

So today my wife, Dr. N, and I agreed that it was time to enter hospice, which basically means that all future medical care will be directed toward my comfort, mostly pain relief, not a cure.

Another anticlimactic visit to Dr. Q’s

I mentioned in an earlier post that Dr. Q had sent off samples from my tumor biopsy to be examined for genetic evidence. So it was with some excitement that I received a call on 1/12 from the Genetics Department at Dr. Q’s facility saying that they’d got back results from that outside lab and wanted to schedule an appointment to review and to take some more of my blood. This was just a preliminary call, the scheduler explained, to try to determine what times and days would work best for me. I gave her that information and she promised to call me back the next week.

Meanwhile, on Monday, Dr. Q left a message on my voice mail going into a little more detail. He said they had found evidence of mutations to the BRCA2 gene (the one also involved with many breast cancer cases) and a couple of others that might provide some additional options for treatment. Then on Wednesday the scheduler called me and said she had just had a cancellation for the following Monday at 11:00 – could I make it? I said yes, of course, and scheduled the appointment.

I was already feeling pretty good that week – few chemo side effects, and a reasonably high energy level (at least compared to what I’ve been dealing with over the last few months). And while we tried not to get our hopes up too much, it was at least looking like some progress was being made on the genetics front.

I was feeling so good that I decided I would try to drive both to and from Dr. Q’s office. Typically I’ve made the drive up, and my wife has driven us home; we split up the duties because this route can face some of the worst traffic in the country, with travel times ranging from under an hour if there’s no traffic (but of course there’s never no traffic) to two or more hours if there are any problems. But I am still usually more comfortable if I’m driving, so I decided to take a shot this time.

We had no problems getting to Dr. Q’s – we arrived about a half-hour early – and I checked in while we sat down to wait. A little before 11:00 we were called back into one of the exam rooms, and we were shortly joined by 3 people from the Genetics division (2 doctors and one counsellor, I think). According to their reading of the results, the mutations to the BRCA2 gene were not considered significant (in other words, they couldn’t be used to target any useful therapies), but there were a couple of other mutations that had a notation about clinical trials. When I asked about those trials, the Genetics doctors said that Dr. Q would have all that information for me – and hopefully more – when I meet with him towards the end of March.

And in order to try to get additional information, they asked permission to run a genetic analysis on my own DNA (not necessarily the same as the tumor’s DNA, which is what the outside lab was studying). Of course I agreed, and after signing me up to be in a couple of studies, we were sent down to the blood draw lab so they could take a few more vials of my blood.

And with that, we headed back home. The drive home was also uneventful – thankfully! – but I realized as soon as we arrived that I was utterly exhausted. I felt somewhat better after a 2 or 3 hour nap, but I realized once again that I just don’t have the stamina I used to have for what I always thought of as normal life activities  . . .

Meanwhile, I’d have to say the appointment itself was at best anticlimactic. We met some nice doctors (and Dr. Q poked his head in at one point to say hi), and provided them with some blood samples to do some further research on – but in terms of practical effects, there really weren’t any. We still won’t know much of anything until the current round of chemo is finished, and it’s probably still something of a long shot to expect any of these new therapies to be ready for when I may need them.

But we continue on.

Chemo #2, Day 1

This past Wednesday I had my first infusion of the new chemo recommended by Dr. Q. It was originally scheduled for the previous week, but it took some extra time to get insurance approval.

The new chemo is a cousin of the old version – part of the same chemical family, but with enough of a different molecular structure that it will act differently in some ways. According to Dr. N, he’s had some patients for whom the new chemo was more effective, and others for whom the original was better. Given that the first 4 sessions I’ve had this fall have been only moderately successful, we are of course hoping for better results with the new drug.

So far the pattern of side effects has been similar. I received the infusion on Wednesday, and beginning mid-day Friday I started noticing the achiness in my legs. It’s hard to compare, but it’s possible that the effects are a bit stronger with the new chemo. (Of course, that could also be because I’m now on my fifth round of chemo, and the overall effects are accumulating a bit . . .)

But in one very important way the experience of the new chemo is far better! With the old chemo, I took a steroid pill the day before and day after the chemo infusion, to help reduce the side effects. But according to the protocol for the new chemo, I am now taking one low-dose pill per day, every day, until I finish this round of chemo. The primary benefit I’ve been experiencing so far is that I have far less fatigue than before!

I wouldn’t say I’m back to normal (whatever “normal” means anymore), but I haven’t felt the need lately to sleep 12 hours overnight, or take a 3-4 hour “nap” during the day. I’ve even been able to resume some short walks (10-15 minutes, but better than nothing!) and other common household activities. (This morning I joined my wife at our neighborhood farmer’s market for a bit of grocery shopping – something I hadn’t done since late last summer!)

As I write this I’m feeling a bit more fatigue; I’m assuming that’s the result of being at the low point in this particular chemo cycle. And on we continue on the chemo roller coaster . . .

An anticlimactic end to a crazy couple of weeks

I haven’t posted lately, not because there’s nothing to report, but because the situation has been pretty crazy and confused. Here’s a quick recap.

I had my 4th chemo session as scheduled on 12/7 (Wednesday), and Dr. N ordered another transfusion the next day because my red blood counts were low again. I had the transfusion on Thursday, and while waiting at the hospital I had a call from Nurse Jade. She told me that the PSA results from Wednesday’s blood draw had gone up significantly! The baseline PSA from the first chemo day was 458; it dropped to 336 on the second chemo day and to 288 on chemo day 3. But the chemo day 4 reading was back up to 442, almost where we started. Nurse Jade repeated what Dr. N had said before, that in evaluating the effects of the chemo they go by the scan results more than the PSA – but nevertheless the news was pretty depressing.

The main chemo side effects started as usual on Friday afternoon, reached their worst on Saturday, and eased up by Monday. Tuesday I went up to Dr. T’s office for the CT scan that was to evaluate the change in the tumors since September (before the chemo began). The scan itself went fine, although I was pretty exhausted the rest of the day. Not sure what brought that on – probably a combination of a later breakfast than usual (since I had to fast before the scan), plus  the barium and/or the iodine they gave me for the scan, plus an unusually hard drive home (although Dr. T’s office is only about 15 minutes away, the freeway was closed when I returned home, and I spent about 45 minutes in bumper-to-bumper traffic).

Thursday was the probably the strangest day we’ve experienced so far. It started when I got a call from Nurse Jade around 11:00 am, and she told me that the PSA recheck on the blood they drew the previous day was at 285 – almost the same as the reading on chemo day 3, and obviously better than the original day 4 reading. I don’t know – and probably never will know – if that was caused by a lab error, or some sort of real but temporary spike in my PSA, but either way we certainly felt more optimistic than we had for a few days.

Then at the end of the day we visited Dr. T to pick up copies of the scan and get the preliminary results – and we had yet another change in mood. According to the radiologists who reviewed the scan for Dr. T, the tumors had grown, not shrunk, since the pre-chemo scan in September – which suggested that the chemo was not doing its intended job.

Dr. T remained upbeat as usual, saying that he thought the drop in the PSA was a more important marker than the size of the tumors, and he suggested that Dr. Q would recommend an alternative chemo to complete the rest of the cycle.

So today (Monday) was our meeting with Dr. Q. When we originally set this up back in September, we were assuming that we’d be looking at a simple yes/no question: has the chemo “worked” or not (that is, do I have less cancer than before, or more)? If it’s working, then we’ll finish the cycle, and if it’s not, we’ll rely on Dr. Q to come up with another plan to keep me going.

What I hadn’t even considered, at least until the last couple of weeks, was the possibility of an ambiguous answer. But, of course, that’s exactly what we got. Dr. Q was encouraged that the PSA trend was generally down (his PSA reading today was 311, which I think confirms that Dr. N’s rechecked PSA was more accurate), and his interpretation of the scans was less negative than Dr. T’s specialists’ – he said the size differences between the September and December readings were basically “inconclusive”. On balance, I think his interpretation is that the chemo is at least holding the cancer at bay, and perhaps reducing it somewhat.

So he tweaked our plan going forward:

  1. I’ll continue with 4 more chemo sessions, but with a somewhat milder version of the same chemo drug. He feels the new version will not generate as much fatigue as what I’ve been taking.
  2. He’s going to send a sample of the tissue from the September biopsy to a specialty lab that will look for genetic markers or other indicators that might give him some additional “targets” for therapy.
  3. He’s also going to try to connect me with a group he works with that does genetic testing and counselling. They would interview me for a complete family history, then run some genetic tests on my blood. Apparently because I’m of Ashkenazi (Eastern European) Jewish heritage, I’m more likely to have some specific genetic mutations that both make me more likely to get prostate cancer, but that also gives doctors some genes to go after when treating that cancer.

I’ll probably meet with Nurse Jade and Dr. N in the next day or two to discuss the new chemo, whether and when to have a “port” installed so that chemo and transfusions can be delivered without an IV, and whether I need another transfusion (based on Dr. Q’s blood work today, I probably do).

Just another couple of crazy weeks in Cancerland . . .

Riding the Chemo Roller Coaster

I haven’t posted lately; in one sense nothing is new, although there have been a lot of ups and downs since my last chemo session on 11/16. For this cycle, at least, my body seems to be following the usual pattern.

The day after chemo (Thursday the 17th) I felt great, since I was still on the steroids they give me to suppress side effects. By late Friday afternoon the achiness started showing up, mainly in my legs. I think Saturday was the lowest point, as it seemed like every neuron in my legs – and a few other parts of my body – started firing at random, as if to say “Pay attention to me!” Between those “flu-like symptoms”, some extra fatigue, and a general sense of feeling lousy, I spent the weekend soaking in a hot bath, or sitting in my chair wrapped in a blanket, reading or watching basketball on TV.

By Monday and Tuesday the worst of that first round of side effects had passed, and I wasn’t feeling too bad when I visted Dr. N’s for my first-week-after-chemo blood work on Wednesday. Of course my white blood counts were low and they gave me a course of Neupogen to fix. They also found that my hemoglobin was low, but borderline as to whether I needed a transfusion. Since we were approaching the Thanksgiving weekend we all agreed to wait until Monday’s blood test before ordering the transfusion.

Not surprisingly, Monday’s blood work showed that my white blood cells had recovered, but the red blood cells were worse, and they ordered another transfusion, which I had yesterday (Tuesday).

I think I’m feeling a little less fatigued today, after the transfusion; now I get to wait until next Wednesday when we start the cycle all over again.

Actually the next cycle will be a bit different, since it will by my 4th chemo session. I’ve scheduled another CT scan with Dr. T on the 13th (about a week after that chemo), and my wife and I will take the results up to see Dr. Q on Monday the 19th for an evaluation of how effective the chemo has been, and whether I should continue with another 4 sessions.

Based on the limited results so far (mainly the decline in PSA), we’re assuming that the verdict will be to continue, in which case I’ll be continuing on the chemo roller coaster until early March.

And on we go . . .

A Good End to a Bad Week

The week since my second transfusion (on election night) didn’t start very well, but at least it had a good ending.

The transfusion itself went fine (about the only thing that did go fine on that night, but I won’t get into politics here . . .). But over the next few days I didn’t feel the expected energy boost. By Thursday evening I was running a bit of a fever (over 102). According to the instructions from the hospital where I got the transfusion I was supposed to call the hospital ER, but I decided to try to reach Dr. N instead. I called his service and he returned my call within 10 minutes; he asked me a bunch of questions about my symptoms and decided that I was unlikely to have any sort of infection. So he recommended that I take a couple of Tylenol and visit his office the next day for a blood workup. The Tylenol did bring the fever down to 100, which seemed to confirm Dr. N’s diagnosis.

By the time I saw Dr. N late Friday morning I was also experiencing quite a bit of soreness in my hips, to the point where I was actually using a cane. The visit with Dr. N ended up disturbing on several fronts.

  • The transfusion had had only a small effect on my hemoglobin level, raising it only to 8 (just barely above Dr. N’s threshold for ordering a transfusion).
  • When I asked Dr. N if he thought the hip pain was caused by the cancer he said he thought it probably was.
  • My wife asked him if it was appropriate to get a handicapped parking placard, and he readily agreed. He also made it a point to give me a permanent rather than a temporary one, since, he said, my condition is not considered curable. We’ve known this for a while, of course, but somehow this made it more real.
  • Dr. N approved of the fact I was carrying a cane because he said a fall could easily lead to a broken hip, and assuming my cancer has spread to bones, a hip injury wouldn’t heal on its own, requiring a hip replacement. (This last point in particular seems to me to be a bit of an overreach, since my last bone scan in September saw no spread to my bones.)

We left the office in a darker mood that we’ve experienced for a while.

Fortunately, over the next couple of days there were a couple of developments that lifted that darker mood.

First, I remembered that I had reduced my calcium intake lately when I ran out of one of my formulations. For the last 20 years of so I’ve experienced various muscle cramps and knots, mostly in my back and glutes, and I learned that for me in many cases increasing my calcium intake (along with some extra stretching and ice) would relieve those pains and even prevent most of them from occurring in the first place. So I refilled my missing calcium and increased my daily dose – and within two days the pain in my hips was gone!

The other development was that the transfusion from Tuesday finally started to take effect, and my energy levels improved over the weekend.

So by this morning when I met with Dr. N prior to my chemo, things were looking much better:

  • He had run a PSA test on the blood he drew on Friday, and it went down again (to 287, down from 336 on 10/26, which was down from the pre-chemo baseline of 458).
  • Today’s hemoglobin level had gone up some more (to 8.5), which was encouraging and probably explained why I’ve been feeling better. Of course, the chemo will drive it down again over the next couple of weeks, but we know how to deal with that . . .
  • I don’t know if he really believed that I was able to eliminate my hip pain with calcium, but he was definitely pleased that the pain was gone.

Going forward, I’ll have my fourth chemo on 12/7, and shortly thereafter will have another set of scans to see what’s happening with the tumors. Dr. N will arrange that with my insurance and then send the prescriptions to Dr. T. I did notice after I got home that he was not ordering a bone scan, presumably since the last one showed no spread to bones. But after our discussion last week I want to discuss that a bit more with him, so I’ll call tomorrow.

I have an appointment with Dr. Q on 12/19 to review the latest scans and other results; unless something major changes between now and then, in all likelihood he will suggest continuing with another 4 sessions of chemo (which would take me into early March).

If we’re lucky, the chemo will continue killing off the cancer cells to significantly lower the amount of cancer in my body, and hopefully the cancer will remain at that lower level for 2-3 or more years. And if we’re really lucky, in that time they will come up with an even more effective treatment!

Today’s chemo session itself went fine. I’m feeling good now, and expect to continue to do so for the next couple of days. Typically the main side effects will hit me over the weekend, and hopefully will pass by early next week. I’ll go in next Wednesday for a blood draw; if previous patterns hold they’ll find my white blood cells are down and I’ll take a course of Neupogen. And in all likelihood on the following week my red blood cells will be down and I’ll need another transfusion.

And on we go . . .