It’s All About the Love

It is with broken hearts that we, Alan’s wife, daughter and son, write this last entry in It’s All About the Parking.

Our dear Alan passed away Friday evening at home in his bed with his family around him. He was relaxed, comfortable and free of pain.

Alan did not like the title of cancer warrior. He did not fight his cancer, he lived with his cancer.

Thank you for offering Alan continued strength and support by reading his words and offering your responses.  He loved knowing that he reached so many and of course receiving your comments.

His funeral will be held in our hometown of Modiin, Israel at 11:00 am.  The family will be sitting shiva together at our home.

The End

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Acupuncture, Radiation and other Areas Outside my Comfort Zone

Nothing deep and philosophical in today’s post.  I’m tired and it is, alas, more of a process piece and update.  But, read on to see how you might be able to help out in a tangible way over the coming weeks.

It’s been a very busy week. I met with a homeopath to discuss pain management, a radiation oncologist to arrange for treatment over the coming two weeks, and oncologists at a Tel Aviv hospital to discuss the possibility of getting in on a Phase 1 study. I’m also corresponding with another hospital here, as well as doctors in the US about other tests and treatments I can pursue.

In short, there’s a lot going on and, while it’s certainly good to be doing something, it all just adds to the “cancer fatigue” I’ve been feeling over the past few weeks.  I am, in short, exhausted, and need to tackle this pain, head-on.

First, the most interesting thing (at least to me) is the acupuncture. The philosophy of the

accupuncture-1

Why not?

homeopath I met with is that all areas of the body can be impacted via the ear. So, after some poking and prodding, he did his thing which, I’m happy to report, didn’t cause any significant pain, at all.  We sat there for about 20 minutes talking about all sorts of subjects (Torah, politics, acupuncture) before he removed the pins.  We’ll go back twice more over the next two weeks and see if it’s helpful, at all.  If not, no loss.  Just something else to try.

Next, and a little more conventional, is that I am set to start 10 daily treatments of radiation over the next two weeks, starting Monday afternoon.  We are targeting a growing tumor on my right pelvis that has been the source of increasing pain for me. Yesterday, I went for the initial simulation where, after a quick CT, the technician drew some lines on my midsection, my pelvis and thighs to help best line up the radiation beams when I go in next week. (SORRY! No photos of that…)

I was pleased to learn there likely won’t be significant side effects, aside from diarrhea (Yay, ileostomy!) and exhaustion.

The schedule is not necessarily the most convenient – late afternoon every day – but it’s what was available.  Soooo, if you’re local and want to help out by giving me a ride and waiting with me one of the days next week or the week after, please let me know.

It’s interesting how we get used to our way of doing things. At first, we were completely discombobulated by “our” hospital, Hadassah.  We didn’t know where to park, how to find our way around, where to wait, with whom to speak when we had issues, and so on.  So, earlier in the week, when we had to go to a different hospital – Ichilov in Tel Aviv – we were at a bit of a disadvantage.  But, I’m happy to report that things worked out well, at least from a logistical point of view.  Parking was a breeze.  We found a convenient spot and didn’t have to pay, as the hospital covers it for oncology patients!  Already a step in the right direction…  Then, finding the oncology clinic was only a minor challenge.

The fun began once we found the clinic, but had to wait an hour to be seen.  Again, I’m always willing to wait; that doesn’t mean it’s not annoying.

In advance of the appointment, I had sent the study coordinator at the hospital a rather thorough email and history of the past five years.  After reviewing it all, she set me up with this week’s appointment to review my case and see if I’d be appropriate for any of their studies.  Apparently, sending all the information didn’t circumvent the necessity to have my history taken, again, by a resident.  And, he did a thorough job.  Two hours’ worth of a thorough job.  (I felt bad for the people who had an appointment after me!)  He then brought in the head of the colorectal oncology department, who is also in charge of the various studies they have going on at the hospital.  Very long story short, there are a few questions that need to be cleared up by my oncologist, after which the good folks at Ichilov will be happy to put me on a waiting list for a Phase 1 study.  (The other hospital I’m talking to, Beilinson, prefers to wait until after my radiation is completed and a follow up CT can be done.)

While my most recent CT clearly shows disease progression, there is some good news to share: my brain and lungs remain disease-free, and my right kidney is showing less inflammation (which was caused by the blocked ureter a couple of months ago).

There you go. Not very inspirational, but informative, I hope.  As always, thanks for reading and have a great weekend!

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Why can’t some people just keep their mouths shut?

The human condition amazes me. I don’t know why, but I’m still constantly floored by the compulsion so many people have to fill a silence with inane chatter that makes no sense.  Sure, maybe they are trying to “help,” but, more often than not, they end up sounding idiotic.

As a cancer patient, I hear things that are, at best, silly and, more often than not, plain dumb. I won’t go into them here because I don’t want to offend others. (I know; I’m getting soft in my old age…)

However, I will share the following tidbit from a good friend who recently “sat shiva” for her mother who died.  (“Shiva” refers to the initial seven-day mourning period per Jewish tradition, where mourners stay at home and are visited by others who come to console them.  The word “sitting” is added, as the mourner sits on a low chair as s/he receives visitors.)

Guest: How did you know that your mother wanted to be buried in Israel?

Friend: Well, she told me personally right before she died. We were very fortunate that she was able to make her wish known and were more than happy to grant it to her.

Guest: Wow, it’s so interesting that she gave up. My friend Jane (not her real name), when she had cancer, she never gave up. even when she knew it was bad, she begged to be TREATED.

Friend: Gasp. Ummmm. Well, er, there’s a big difference between giving up and acceptance.

Guest: Well, Jane wouldn’t have given up, that’s my point.

Friend’s stifled comeback: Well, Jane clearly was the winner of cancer!

What is wrong with people? Seriously…  Why is acceptance of one’s situation considered giving up?  Clearly, this shining intellect has no clue of what it’s like to live with cancer and has never experienced, or been close to someone who has experienced, the absolutely crushing toll treatment can take on a cancer patient.  I admire my friend’s ability to hold her tongue; I certainly would not have been so polite.

I assume this doesn’t surprise you.

Anyway, I’m glad that, for the most part, I’ve surrounded myself with people who are smart…or at least smart enough to keep their mouths shut when they don’t know what to say.

True, for the most part, I put on an incredibly strong face, but the reality is this is all exhausting.  It’s been five years – a miracle! – but that doesn’t take away from the “cancer fatigue” I feel on a daily basis.  I don’t mean the literal physical fatigue from treatment or the disease itself; I mean the ongoing weight of having to deal with cancer.

A friend of mine once asked if I think about cancer every day. I was kind of surprised at the question.  Of course I do! And not just every day, but every minute of every day.  Even when I’m lucky enough to enjoy the company of friends and family, hanging out just having a good time.  It’s always there and always the albatross around my neck.

Wow. That turned depressing real fast! But I’m going to resist the urge to edit.  It’s my train of thought and important for those who take the time to genuinely ask me how I’m doing.

As for what’s going on, I’ve stopped taking the TAS-102 as it’s not really doing anything any more.  I had a good run of a few months with it, but a recent CT scan and blood work show that the cancer is continuing to progress, which is no surprise given the increasing pain I’ve been experiencing.

So, next up are a few options.  I will look into possible studies in which to participate here at home, as well as around the world (which I think really means Europe and the USA – and which will present logistical challenges). I am also going to meet with a radiologist radiation oncologist to see if localized radiation makes sense for one area that’s the source of a lot of pain.  I’ll also meet with the hospital’s homeopath to see if he has anything to suggest.  And, I’m talking to an oncologist based in NY who has a somewhat unique approach to chemotherapy treatment.

Lots to consider and, to be honest, it is a bit overwhelming (and adds to the fatigue). But, I know I will get through it, taking it all one step at a time.

I’ve also met recently with a nurse who specializes in pain management and she offered some suggestions on how to better take my pain meds.  What she told me seems to be helping, which is great, in and of itself.

And now I will prepare to enjoy my first post-daylight savings time Shabbat, which means it starts incredibly early.  Thankfully, we have both kids home, as well as a close friend from the old country who came to visit for a long weekend.  There are tantalizing smells wafting up from the kitchen which require immediate investigation…

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Between Gratitude and Hope

Tuesday evening marked a very special occasion for me, on an intensely personal level.  I was privileged to lead my congregation in the recitation of Kol Nidreh, which is said at the beginning of Yom Kippur – the Day of Atonement, the holiest day on the Jewish calendar.

It was more than 20 years ago that I first started leading services on the High Holy Days, first at a synagogue in Staten Island, then in Wesley Hills, NY, Buffalo, NY, and then for a few years, as a paid position in Baltimore and, finally, in Israel.  The last time I was able to do so was in the fall of 2010, one year prior to my diagnosis, as in 2011 I was too ill – although I didn’t know why – to participate.

Truth be told, I wasn’t sure I’d be able to this year, but thankfully I was feeling strong enough and, at 6:00 p.m. on Tuesday, I took my place on the bimah, the elevated platform toward the middle of the synagogue, as two Torah scrolls were brought out and held on either side of me.

There are several variations of Kol Nidreh, and all are simply annulments of vows.  All formulations refer to vows we may make in the coming year, while others refer first to vows made over the previous year, as well as those in the coming 12 months.  In our synagogue we say the latter.

Singing those words – “From Yom Kippur past to this Yom Kippur, and from this Yom Kippur to the next Yom Kippur, which should come to us for the good” – was when I was first overcome with emotion.  Then, again, emotion was running strong at the conclusion of the Kol Nidreh, when we recite a blessing of thanks for being able to reach this milestone.

In an instant I was caught between two distinct yet powerful feelings.

On the one hand, I thought about everything that has happened, not only in the past 12 months, but really over the past five years since I was last able to participate in leading services.  The gratitude I had was overwhelming.  Five years is a milestone when it comes to cancer. In no way am I cured or close to it. But, I was able to do something I haven’t done in years.

On the other hand, I thought about the coming 12 months.  In the best of circumstances, we have no way of knowing what will happen in the future, near or far. But I couldn’t help but feel hopeful as I stood in representation of the congregation, strong enough at least for the moment, to lead them in prayer.

Gratitude and hope are two emotions that, I think, play off one another quite nicely. You certainly don’t need one to have the other, but experienced together the result is exponentially sweet and a wonderful way to start off the New Year.

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The Importance of a Medical Advocate

A friend whose parent is dealing with cancer shared with me this article (“Hospitals and the Decline of Comprehensive Care”) from The New England Journal of Medicine.  It addresses the disjointedness of the healthcare system (in the US only, I assume). The author argues that the growing prominence of hospitals in delivering healthcare is only detrimental to patients, as it all but destroys the patient’s relationship with his/her local community doctor – the person who ostensibly ought to be most involved in the patient’s care.

The author’s conclusion is simple.  He argues that “good medicine” can only be practiced if there is a true relationship between two people and not between a person (patient) and institution.  I wholeheartedly agree.

The article, and talking to my friend about it, made me think about my experiences over the past five years and, more specifically, the importance of having a medical advocate at one’s side at least whenever admitted to a hospital (or, even better, any time one goes to see a healthcare professional).

Four ears are better than two; as are four eyes, two brains, and so on.  It’s impossible to keep up with everything that is said, even in the best of times, forget about when one is drugged, dazed and confused when being admitted to a hospital.

As I’ve written countless times over the past five years, I hate to think about where I’d be right now, were it not for my constant medical advocate and concierge…

While it’s easy to pontificate about something when not in the throes of the situation, I’ve earned the right.  So, to be helpful, here are three ways having a medical advocate can be helpful:

  1. Listening.  Like I said, four ears are better than two.  A medical advocate will listen to instructions and ask the right questions, especially when it comes to medication.  Try following directions when hopped up on morphine!
  2. Monitoring.  Nurses are busy and if they can’t get to a patient it isn’t due to malice.  It’s because someone else more immediately needs attention.  An advocate will pursue the nurse to see where those pain meds are.  The same unfortunately holds true for making sure whatever tests are supposed to be performed are being performed.  As I saw a few weeks ago: it’s very easy to fall through the cracks.  Having someone who can physically go to see what can be done to get a patient to the head of the line is invaluable.
  3. Thinking.  Being hospitalized is overwhelming in the best of circumstances; forget about it if you have a life-threatening disease and need to make a decision, as in thoroughly understanding what treatment options are.  Having someone at your side with whom to discuss what comes next is incredibly helpful.  If one is lucky enough to have a medical advocate who is also a trained professional, making a decision can be that much easier, as the advocate is coming from a position to knowledge and understanding that probably well-exceeds the patient’s.  (Careful, though, that if you’re relying on someone’s “trained” opinion, that the person in question is actually trained in a field relevant to what the patient is going through.  An ophthalmologist may not be up on the latest breast cancer treatments.  That’s not to say said ophthalmologist can’t be helpful – and nothing against eye doctors! – I’m just saying be realistic.)

I’m sure there are many more ways a medical advocate can be helpful, and this isn’t meant to be an exhaustive treatment of the subject.  It simply occurs to me that making sure there is someone at your side who is ready to play an active role in ensuring you get the medical care you need is simply not an option.  It’s a requirement.  And I believe it’s helped me get this far.

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Getting Busy

Hello!

Last week I had my monthly follow up with the oncologist.  Unfortunately, my tumor markers have risen significantly and the results from my CT and ultrasound, both taken when I was recently in the hospital due to my blocked ureter/kidney, show tumor growth in my liver, pancreas tail and peritoneum…all the problem areas we have known about and have been tracking for some time now.

All this taken together strongly suggests the TAS is at best only partially helpful, that is, if it is doing anything at all, it is likely slowing the cancer’s growth to a small extent.

The next treatment option is Mitomycin C, a more “traditional” chemo that I’ve tried once before.  (I had one treatment before starting the TAS-102.)  My oncologist is willing to put me on it, if I want. But I don’t, just yet, as I don’t want to deal with the side effects at this time.

The good news is that I continue to feel relatively OK.  I have been having some increased pain, but I have the meds to deal with that.

The good doctor also called a colleague of hers at Tel Hashomer hospital to see if they have any studies, or there are any others going on here in Israel about which I should know. Not at this time…

Taking all this into account, we’ve made the decision that I will continue with TAS-102 for another cycle and, assuming my symptoms don’t get any worse, we will continue with it.  If things do get worse, I will immediately stop the TAS and we will reevaluate.

So right now the focus is on having a great High Holy Day season (almost here!), focusing on that which I enjoy – family, friends, work – and, as always, managing my symptoms.

Speaking of enjoying myself, my aunt and uncle just arrived for a week’s visit and we spent this past Shabbat in Jerusalem at a dear friend’s Bar Mitzvah.  What an amazing way to counteract my Thursday appointment!

The arrival of my aunt and uncle also marks the start of visiting season that will include visits from my in-laws and both my siblings!  It will be busy over the coming six weeks, but it will be a “good” busy.  I’m really looking forward to it!

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Alan Takes a Ride in an Ambulance!

Apparently, it’s not old age.

Two weeks ago, I reported on my aches and pains and my oncologist’s suggestion that it can likely be ascribed to “getting older.”  Maybe some of it can, but some of it certainly can not.

Two Saturdays ago I woke up with more-than-usual pain in my lower-right back and, after a raucous internal debate, decided the time had come to go to the hospital.  I discussed with Tammy, and she came to the decision that the best course of action would be to call an ambulance.  A quick call to Magen David Adom and, minutes later, a trio of volunteers shows up at our door, ready to whisk me to Hadassah Ein Kerem, where I get my usual care.

The volunteers were great.  They were patient, helped me down the stairs (no elevator) and ambulanceinto the van, and the young guy who was driving took care as best he could to avoid bumps and dips in the road.  No need for lights and sirens; avoiding extra pain due to unnecessary jarring was the name of the game.

We were brought right in, I was immediately placed in a bed and in (what seemed to me, at least) moments, I was being attended to by ER doctors and nurses, with someone from oncology on the way.

The immediate concern was to determine the source of pain, most likely: (1) my liver stent which you will remember was inserted in March of this year, (2) an infection, possibly due to the stent or something else, likely my right kidney, (3) something else.

I had brought along all of my meds that I take on a regular basis, which made answering the question of “What medications are you currently taking?” a whole lot easier to answer.  And, when I was asked if I wanted morphine in addition to what I already take, the answer was a quick, “Heck, yeah!”

There was no question I needed to be admitted and tests administered, starting with blood cultures and an ultrasound.  The only challenge was there were no available beds in oncology (Yes; it’s becoming an epidemic.), but a place was found in the new building, on the Plastics/Ear Nose Throat floor (Why are they together?) and I was moved in what seemed like no time at all (thanks to morphine?) to the seventh floor.

So far, so good, right? Yeah, that should have raised an alarm.

We spent the rest of the afternoon listening to my roommate snore and having pain meds administered as often as possible.  But no ultrasound.

Sunday was spent listening to my roommate snore and having pain meds administered as often as possible, until midday, when we saw the oncologist who was responsible for my care, at that point.  She was somewhat surprised I hadn’t had the ultrasound yet and when she spoke to the nurse, she was told it was never ordered.  She was slightly perturbed and said, “It’s ABC, of course he needs an ultrasound!”

“But no one ordered it.”

And so, it was ordered.  The oncologist then offered a piece of advice: sometimes it’s helpful if a family member goes down to politely ask if their loved one can, you know, be seen in a timely manner.  So Tammy did that and was told by the receptionist that she had “no clue” when I would be called.  About an hour later, Tammy went back and this time, the receptionist was a bit nicer and said they were ready for me.

As I’m laying on the table, the technician starts asking me useful and helpful questions like, “Didn’t anyone tell you to fast before this?” and “How come you don’t have a previous ultrasound for comparison purposes?” and “How am I supposed to tell what I’m looking at?”

With that great experience behind me, it was back to my room for more waiting and snoring (not mine) and pain meds.

Monday morning comes and a new oncologist has taken over. He ordered a CT and told me that I’d have to wait a while to have it done, likely “after 5pm” when things calm down.  So, I assume the good news here is that I’m not an emergency case and that it has been determined I could wait.

And wait I did. With increasing pain. So much so that every breath I drew caused stabbing pain on my right side.

At 5:00 a.m. Tuesday I asked the nurse why I need to wait so long for my CT and she understandably had no idea.  She offered to call the CT receptionist at 7:45, as that’s when the counter opens.  So I texted Tammy and asked her to be at the hospital by 7:30 to go herself to the CT desk.  Which she did and had the following exchange as she crouched to engage the receptionist who was hiding behind a closed window shade with about an inch of room:

“Can you tell me when my husband’s CT will be?”

“Uhghh-mnn,” delivered with a shrug, as in “How should I know?”

“My husband is lying in bed, suffering, and waiting for the CT so the doctors can know how to help him. What can you do to help us?”

No response, but she did look at the computer, after which she replies, in intelligible Hebrew, that she will call for someone to get me.  Which she did because as soon as Tammy got back to my room, someone was there to take me down to the CT.  Here’s the best part: know how long the CT itself took? About 90 seconds. That’s right.  There was apparently no time the day before for a 90-second CT.  (I seriously don’t know what how patients who have no one to advocate for them get by.)

Back in my room by 8:30, the oncologist came by shortly thereafter and said that he saw the images and this is clearly a case for urology as the issue is with my kidney – hydronephrosis – inflammation of the kidney. (Liver functions all came back OK.)  Shortly after 9:00, the urologist stopped in to introduce himself and to explain what would happen next.

Let me tell you, of all the doctors I’ve met in the past five years, this guy has possibly the best bedside manner. He was calm, patient, willing to explain things several times and, when I was brought in for the procedure (details in a minute), he insisted on first sitting with us to review my ultrasound and CT images to explain in detail what he intended to do.

The hydronephrosis was caused by a blockage in my right ureter, which moves urine from the kidney to the bladder. In all likelihood, the blockage was caused by a tumor and, the uretergood doctor’s plan was to open the blockage and insert a stent to keep the urine flowing more freely.

There are a couple of ways to achieve this. The preferred method is non-surgical and requires inserting a wire and stent directly through the bladder into the ureter. How is this done non-surgically? Well, let me put it delicately and say it involves lots of local anesthetic, a very steady hand and absolute faith in whomever is performing the procedure.  A sedative is possible but highly undesirable as it renders the patient unable to follow directions.

Using a portable x-ray machine (don’t know how else to describe it) the doctor saw, once he was in, that things were a bit more complicated than anticipated. (No surprise there, right?)  See how the ureter basically goes straight down in the image to the right?  Well, not mine.  Due to a blockage right near the bladder, the upper portion was S-shaped.   So, before being able to insert any stent, the whole thing needed to be straightened out.  That’s when the fun began.  No local anesthetic up near my kidney, so I felt every manipulation, twist and turn.  Several times, he was ready to stop to acquiesce to the second option (involving incisions and drains and more days of pain, I believe), but the colleague assisting with the moveable x-ray kept encouraging the doctor who, I think, was so overcome with guilt for the pain he was causing.

In the end though, it was a success and as soon as I stood up from the table, I felt relief starting. I was able to breathe.  Yes, there was urine and blood everywhere and I no control over anything.

But I was able to breathe.

To test whether the kidney would drain, the doctor had injected some dye into my kidney at the end of the procedure and asked me to move around a bit for about 10-15 minutes, emptying my bladder as the urge came.  I did and then got back on the table.  You should have heard the exclamations of joy from the doctor when he saw that my kidney had completely drained!

So, I was eventually  sent back to my room, wearing a diaper, knowing I had very little control over my bladder and enduring intense pain whenever it emptied.

But I was able to breathe.

That evening, I was reminded of something I had almost forgotten: every meal can and should be a Meal of Thanksgiving. After not eating for about 24 hours, I was able to enjoy – not just tolerate – a sandwich Tammy had bought for me. My appetite was returning.  I was in less pain.

And I was able to breathe.

The oncologist came by later that afternoon to take more blood for cultures and informed that if everything comes back OK, I could go home, likely in two days.  Wouldn’t you know it, but the next day, Wednesday, all was OK, and I was discharged around noon.

I still don’t have complete control of my bladder, and the pain is pretty intense every time I empty it, but at least I can breathe pain-free.  I acquired a package of Depends pads so at least I can be out and about with confidence, just like in the commercials!

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This ‘n That

Apparently, I’m not as young as I used to be.

When visiting my oncologist last week to review recent blood tests and to discuss continuing to move forward with the TAS-102, she informed me that, contrary to what she has told me in the past, not all of my aches and pains can be ascribed to cancer.  It seems that some of my muscular soreness might actually be a result of – gulp – getting older.

That and the fact that I don’t exercise at all, and my muscles have become de-conditioned.

And I’m pretty fastidious about my “eat whatever the heck I want to” diet.

All that taken together means that, when I exert myself in any appreciable way, things will likely hurt for a few days after.

Good thing I have no shortage of painkillers from which to choose, after spending Thursday last week moving some bags around that I probably should not have.

Although, it should be noted, that when I did push the good doctor and asked if it’s at all possible that, you know, cancer is causing me pain, she acquiesced.

OK, so I don’t feel like a complete idiot, and I will  continue to avail myself of the plethora of pharmaceutical and botanicals I have at my disposal.

Oh! Speaking of which, I received a call the other day from Tikun Olam – my cannabis supplier – wanting to know how I’m doing and am I still using my herb. When I explained that I basically use it when I want some extra help calming down and generating a buzz since I no longer partake in adult beverages, the surveyor was somewhat taken aback.  I had to explain that I found the pharmaceuticals better at killing my pain and augmenting my appetite.  For now, at least, Herb’s just for fun.

So, I just started another two-week course of TAS-102 and will engage in the usual blood tests in a few weeks…

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For the past 23 years, Tammy has be lighting Shabbat candles using the silver candlesticks that belonged to my mother.  A few years ago, after her paternal grandmother died, Tammy added her small candelabra, as well.

Approximately once or twice a year we polish them, to the best of our ability.  But last week, we decided to have them professionally cleaned.

What a difference.

I couldn’t help but snap this hasty pic of the candlesticks in use; I found myself thinking Shabbat candlesabout mothers and grandmothers and how, usually, such candlesticks are purchased early on in a marriage, when possibilities are endless, imagination limitless and potential immeasurable.  No one thinks about the unexpected, unwanted twists and turns.

The train of thought here is obvious, I assume.  Did my mother have any inkling of what would happen to her? Not a chance, just as Tammy’s grandmother had no way of knowing where she’d end up – New York by way of Israel – when she acquired her small candelabra in Germany.

And, when I inherited my mother’s candlesticks, more than 30 years ago, to be used when I established my own home, I had no way of knowing…anything.

None of this “teaches” us a thing.  It is just a reminder that we simply don’t know what tomorrow brings.  So, for now, let’s enjoy today’s shiny silver.

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Gratitude – and not just for how amazing I look!

Hello!  Lots to write about today…

First, I’m pleased to report that last week I finished another round of TAS-102, which seems to continue to work, at least in terms of managing my symptoms.  I did have a spike in back pain last week, but I’m hoping that had more to do with the stress and exertion of being over-scheduled during our week-long trip to NY.  I’m still waking up some nights, thanks to the pain, but I think the number of painkillers I’m taking in any given 24-hour period is going down.  I’ll know more over the coming days, I guess.

Speaking of our trip, it was great to be back in the office, seeing friends and colleagues there, as well as family and friends outside of the office.  Truth be told, we tried to get too much done, and I paid the price physically.  If there is another trip in the future, there will be more downtime scheduled.  There has to be.  But, I’m thrilled we were able to make the trip and, in a few weeks, I’ll be optimistic and start planning my next one.

——————————–

 I won’t bore you with the all the details of who I saw and what they said, aside from two interesting encounters with friends.  One was a couple with whom we’ve been friends for about 25 years.  We don’t see each other often, but whenever we do it’s always wonderful to catch up.  Our conversation – brief as it was – turned to this blog and our friend said that back in March she noticed a shift in my writing.

“I don’t like it,” she said.  “You’ve become too philosophical, whereas you used to be a bit more of a jerk and that was more entertaining.  Now, your writing is becoming deeper, and I don’t like it.”

Well, that was a fine how-do-you-do and it wasn’t until I was talking about it with Tammy that she explained to me what our friend was saying.  She was simply pointing out that she didn’t like the fact that I’ve become more philosophical in some of my writing because of what it represents and not because she – God forbid – doesn’t like my writing.  To her, it represents that I am somehow less committed to “fighting” (Careful, there’s that word again…) and that doesn’t sit well with her.

I get it, and she is both right and wrong at the same time.

Yes, my writing has shifted somewhat in tone – I’ve written about this before – but in no way am I less committed to pursuing reasonable treatment options.  I simply understand where I am in the process and what the future most likely holds.  That doesn’t mean I’m morbid or defeated or depressed or fatalistic.  It just means that I’m realistic.  I think I have always been, based on the information I’ve received from my healthcare providers.  They guide me and I make my decisions the best I can because, at the end of the day, I’m the one who gets to have the needles stuck in him, and I’m the one who has to endure whatever side-effects there are.

So, for now, TAS-102 seems to be doing well for me, and I’m thrilled to have it for as long as it lasts.

RC, no harm done and I forgive you!

The other funny story was when I saw another friend whom I’ve known for at least 10 years and, upon seeing me, he couldn’t get over how great I looked.  (In all honesty, it may have been the suit and newly shined shoes – something else I’ve missed terribly – or the extra couple of pounds (I’m now back up to 65kg/143 lbs.) or the fact that I was just happy to be in NY…)  He and his brothers just couldn’t believe I looked so good.  As he put it: “You look like someone who once had something but now everything is OK.”  And: “You do not look like what I expected after reading your blog.”

Really?  Is it that morbid?

Frankly, I was taken aback at first, but now I think I get it.  Cancer is funny that way.  Sure, there are cancer patients who look like cancer patients (whatever that means) and then there are cancer patients who, like me, look pretty damn awesome.  And that can be for any of a number of reasons.

So, my apologies if I don’t look like what I’m supposed to for someone with a Stage 4 motherfucker of a cancer, but rest assured, it’s quite real, quite threatening, quite the source for insomnia, and quite a big deal.  But right now, I’m doing well because I look quite awesome (as was pointed out to me) and I have baskets full of medication of all sorts to make sure I continue to feel quite as good as I possibly can.

It’s OK, SS, no harm done and I forgive you, too. 🙂

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 Finally for this update, today marks nine years since my family and I landed in Israel.  In many ways, I question whether or not I should be writing about this in this forum, as it’s not really on-topic.  But then I realized, it most certainly is.

First, it’s very possible that the cancer was already growing inside of me back in the summer of 2007 when we boarded the ELAL plane.

Second, and more importantly, there are a number of reasons why Tammy and I decided to make the 6,000 mile move…none of which I will get into here because that would certainly be off-topic.  What is relevant is the retrospective real reason we are here, the one we could not have possibly considered.  Sure, my children have flourished in a way that would not have been otherwise possible.  But that’s not what I’m talking about.

I’m talking about being diagnosed and treated here.

It’s entirely possible that my healthcare team in the US would have been as good as the true professionals I’ve been lucky enough to meet here.

It’s entirely possible the treatments I’d have received in the US would have been as effective.

But one thing is for certain: had I been diagnosed and living in the US, pursuing treatment there, I’d be flat broke.

There is no way it would have been otherwise.  Here, cancer patients are treated very well.  Sure, the care isn’t as “pretty” as it is in the US, but everyone gets seen when they need to be seen.  People still ask me if I’d rather travel to the US for treatment and I patiently explain to them that, in my case, there’s no reason to do so. I know of cancer patients with “very good coverage” who have to fight tooth and nail for everything.    It makes no sense.  Here, I get what I need, and more.

So, as I look back over the past nine years, I have many thoughts and many reasons to be thankful for how amazingly well my family is doing, starting with my children.  I look at them and simply can’t believe how they are turning out.

But, equally so, I am grateful for the medical professionals I’ve met and the treatment I’ve received, and for the knowledge and understanding as to what the “real” reason is that we are here and able to live this dream.

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Back to Work

Good morning.

Yesterday was my monthly follow up with the oncologist to see how the TAS-102 is working.

In short, good news.

Even though my tumor markers have shown a split decision, i.e. some down and some up, the doctor is confident that the Japanese drug, along with everything else I’m taking, is doing something positive.

Her primary evidence for this is the fact that I continue to feel, all in all, much better than I have in a long time.  Oh, and I do look good!

That said, we will continue with another two weeks of pills, starting this Sunday. After which we will do another blood test, followed by another appointment with the oncologist toward the end of August.  At this point, she sees no need for a CT scan now. We will do that after one more round of treatment, likely in September, assuming test results remain consistent with or better than what we saw yesterday.

As before, no one is talking about either remission or cure.  The name of the game remains to manage my symptoms – primarily pain and sleep issues – to the greatest extent possible. The former seems to be under control. While I still take my usual morning and nighttime painkillers, I no longer need four to five additional pain meds throughout the day; I’m down to one or two.  That’s huge!  Sleep is more inconsistent and probably has more to do with anxiety than anything else. Thankfully, I’ve got various pharmaceutical options in that department, too…

One of the drugs I’m taking is a steroid called Dexamethasone, which is supposed to help reduce swelling of internal organs, and also stimulate appetite.  I’m pretty sure it’s doing both, as my pain is greatly reduced and I am hungry at almost all hours of the day and night.  (Not to worry, my weight seems to be a consistent 63 kg/139 lbs these days.)  A word of caution, though: do not mix Dexamethasone with caffeine.  I’m pretty much off coffee these days, but I do miss the taste. So the other day I made myself a morning cup of joe.  Almost immediately I was bouncing off the walls; I just didn’t know what to do with myself. Thank god Tammy just laughed it off, because it took the better part of the day for me to come down from that high. I don’t even know if I can call it a “high.”  I think I have a better appreciation for those with ADD/ADHD.

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In other good news, the past two weeks have seen me return to some regular work, for which I am extremely grateful. I’m hoping that trend continues and that I can find ways to be useful to my amazing colleagues who, for so long, have made my life much easier than I deserve.

The impact of reengaging with my coworkers has been simply amazing.  While I’m nowhere near the productivity I once enjoyed – and I’m pretty sure I will never be there again – knowing that I can add value and not just do busy work is, in itself, therapeutic.

I’m sure I’ve referenced Cancer and Careers, an amazing organization I was introduced to by Julie Jansen, that helps cancer patients address the second question they usually ask after receiving their diagnosis: Will I be able to continue to work?  Thankfully, I haven’t had to tap this resource, but it is seriously useful place for someone to start when first diagnosed.

As I prepare to coast into a relaxing weekend with friends and family, I wish you the same.

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