Update from the man himself

Tonight, an update straight from my Pops!

It’s time. I feel like I’m approaching and passing a roadside marker. I’ve begun to call friends and clients to tell them that I’m beginning to feel like myself again. It’s less than three months since the surgery, not to mention the two infections I’ve overcome, and I feel my stride getting steadily stronger. Right now, I want  to book single day shoots and build from there.  And- voila! -  there are some already appearing on my calendar. Amazing! 

I’ve been told to expect a 3-6 month recovery period, and this seems right. In fact, most folks I’ve spoken with about their Neo Bladder surgery, have told me to not to expect full recovery for one year. While that seems right enough, I’m so glad to be gaining back my strength and most of the weight I lost during the chemo, the surgery and the recovery.

Swamp Thing

Hey, everyone. Long time no blog!

It's been seven weeks since the surgery - not a long time in the normal world, but an eternity in a post-op existence. There's no way to sugarcoat this: recovery is a bitch.

Eddie has had a couple of infections since being home, one of which landed him back at Memorial on August 4th with a fever, shakes, and a high white blood cell count. While infections are common during recovery, I don't think any of us was anticipating Eddie would get one - much less that it could take so much out of him. To be back in the hospital so shortly after the surgery was dispiriting to say the least (in a recent email to me he called in the "kidney infection swamp"), but he weathered it like a champ.

The good news is that the doctors did a lot of testing in order to give him a super targeted antiobiotic, the infection has been eradicated, and he is feeling much better. His recovery is back on track and he's gaining energy. His appetite, both literal and metaphorical, is growing (which is good, because he lost quite a bit of weight). The juicers are whirring. He is training his new bladder, which is a slow business, but medically he is right on track.

Perhaps best of all - his hair is growing in. Brother Don is visiting this week, and then Eddie will return to the dacha for some country living.

 

Eddie and the water lillies

 

Seven and Three Quarters Inches

That's the length of Eddie's new scar, extending roughly due south from his bellybutton. The staples came out today, and the doctors say Eddie's abdomen is healing nicely.

I saw him today for the first time since July 4th (Aaron and I were traveling in the UK). The atmosphere at home was cheerful, and there are good reasons for it.

For one, Bruna (the dog) is back home, and a new inducement for Eddie to do all the walking the docs are recommending.

Even more important, preliminary pathology on the tissue removed in Eddie's surgery shows no residual tumor.

So - lots to celebrate!

Freedom

Happy July 4th everyone. Eddie came home today. Fitting that he would be released from the hospital on the anniversary of the country's independence. Wheee!

We are relieved to have him home, as is he. We've got two giant bags of supplies for home care of his apparatuses, and a visiting nurse will come every one to three days, starting tomorrow. His next appointment with his surgeon is on Monday, when his stents will be removed. This is all very good news, but of course it's not all fireworks and celebrating around here - there is a lot of rest and recovery ahead. So: onward.

Enjoy the hot holiday. We will write again soon.

Peekytoe

Hi folks,

This is just a quick note to let you know Eddie's recovery is moving along nicely. Aaron and I visited him this afternoon - Hana and Leda were already in the room.

Earlier in the day, Eddie did some laps around the fifth floor of the hospital (close to half a mile, we figure) and was pretty lively when we arrived.

He's sharing a room with a loud French Canadian, who apologized for being too loud.

Tomorrow, we're hopeful he'll be allowed to drink liquids. Everything in time.

Give his toes a mental squeeze if you will.

Surgery complete, succcessful

Sorry for not updating the blog yesterday. Today's post is long, but if you don't feel like reading it all, just know that the surgery went well, everything was as planned, and Eddie is recovering at the hospital. If you want the longer version of how the whole day went, read on.

Groupthink. The good kind.

Hi, all. It's been a while, in a good way. I think we have all enjoyed the break between the final round of chemo and the next step of surgery on Saturday the 29th. While we like to joke that we have to give Eddie whatever he wants because he has cancer, it has also been nice to spend some time forgetting about sickness and treatment. But, time passes. As much as we wish it weren't so, we know that the surgery is a necessary part of recovery.

 

We are writing to let you know and to ask you to think good wishes for us. My dad loves hearing from all of you, so anyone who wants to comment here or write him a note is really encouraged to do so. 

 

Our mom is also inviting all his friends and family who are so inclined to share in a meditation for his surgery and complete recovery on Wednesday the 26th, from 9pm to 10pm Eastern. In her words: 

Our joining together multiplies manyfold the power of our intentions. You can join us at any point in that window; or you can do it individually if that is better for you, or again at the time of the surgery from 8am to 1pm.

I'll plan to post an update here later in the day on Saturday, once he is out and in the recovery unit, or early on Sunday. 

Thank you, always, for all of your warm wishes and support. They keep us buoyed.

Early June Thoughts

Hi everyone,

Yesterday at the farmer's market, some stalls were selling vegetable seedlings at a discount because it's the end of the planting season. Can time really be moving so fast?

On Friday I accompanied Eddie to one of his pre-op appointments. The entire effort now is at preparing for major surgery, the first in Eddie's life, on June 29th.

Recovery and recuperation happens in stages, measured first in weeks, then months. And we are planning for it. Don and Harriet (brother and sister in law) have kindly volunteered to stay at my folks' Pennsylvania cabin and look after the domestic fauna, while Eddie recovers in the city. Hana, Leda, and I will all be in New York with him.

One perhaps unexpected aspect to this health crisis is the re-appearance of Eddie's mother's letters. Dorothy Marritz had a degnerative nerve disease from the time Eddie was born, and died shortly after he reached adulthood. In the last few months, Eddie and his older bothers Robert and Don have been scanning and circulating via email various letters she wrote. These illustrate the unique Marritz family dynamic - all families have one, similar almost to a fingerprint - and also Dorothy's very personal thoughts on pain and health. It amazes me again and again that a voice on the page can have so much power, many years later.

After the appointment on Friday, Eddie and I stood in torrential rain, waiting for a crosstown bus. Then we caught "Before Midnight". Great movie, I think he and I would both recommend it.

CT Scan Results

Hi, everyone. We got some really good news this week, which is that my dad's CT scan was pronounced "terrific" by his oncologist, meaning no metastatic activity (their words). Cancer valedictorian?

My dad, mom, and Uncle Robert all went to the appointment to review the results, which also included the surgeon, Dr. Dalbagni. All three got a chance to ask their questions and were told the options. Dr. Dalbagni and Dr. Bajorin were both unequivocal in their support for entire removal of his bladder and reconstruction of a new one, presuming everything is what they expect when they open him up. Recurrence of this cancer is very common if the bladder is not removed, and recurrences are very, very difficult to treat successfully.

We are all feeling very heartened by this news and met today to talk about planning for the surgery, which has been scheduled for June 29th. 

Chemo, Finito

Before Eddie got cancer, I didn't really understand what chemo was. Technically, I knew that powerful chemicals were involved. But I had no clear picture of exactly how these chemicals got into the body, or why the word "chemo" invariably makes people shudder.

Now I know it's just an IV conducting clear liquids into the patient's bloodstream. When a person gets chemo at MSK, they and their guests are entitled to free tea and coffee, and unlimited honey graham crackers. The staff are astonishingly kind and upbeat, NOT in an I-actually-feel-sorry-for-you way. In some sense, chemo is not as bad as you may have heard.

In other ways, it's pretty rotten. A few days after chemo, the dreaded chemicals make Eddie sluggish and despairing. Saturdays seem to always be the worst, with his spirits brightening again by Sunday or Monday. So whether you believe in good vibes or not, please send him some this weekend!

We're only beginning to learn about the next steps, including bladder surgery. Of course we'll keep you posted as we learn more.

Meanwhile, raise a glass of whatever you happen to be drinking, and let's toast Eddie for completing the final round of chemo. A few missing hairs notwithstanding, You look great!

Aaron Hicklin (l.), Eddie (r.)

The fourth and final round

Today was the first day of the fourth and final round of chemo. Even though surgery - and a new way of life - is next, this still comes as a relief. Aside from some tiredness directly after the chemo is over, my dad's energy and spirits have been very good throughout the whole process. He feels like himself.

My dad's oldest brother, Robert, is in New York visiting through the middle of next week. (Their middle brother, Don, was also visiting this past weekend. Bromance.) Robert will actually stay for the CAT scan on Monday, to determine whether the cancer hasn't spread elsewhere, and the follow-up appointment with the oncologist (Dr. Bajorin) and the surgeon (Dr. Dalbagni) on Tuesday. We're assuming they'll give their assessment of how the four rounds of chemo went, and what the likely prognosis is.

After the CAT scan, and pending the surgeon's schedule, we expect to have a date for the surgery - likely sometime in late June from what we understand.

In other news, a documentary film that my dad filmed about Ricky Jay called Deceptive Practice recently opened in theaters! 

Chemo: Round Three Done!

Before I launch into my account of Chemo: Round 3, I wanted everyone to know how much your care, support, and love mean to me. Your calls and emails arouse a sense of possibility and courage, which, in turn arouse courage and strength within me. I’m accepting and embracing the good vibrations from you well-wishers, so your willingness to be with this, to be with me in this, is deeply appreciated.  I stay present, and staying present in this current situation, not wandering too far into the past or the future, keeps me calm and focused on getting well.

Round 3 of chemo went smoothly. Before the infusions began, my Oncologist, Dr. Dean Bajorin at Memorial Sloan Kettering Cancer Center, read my vital signs, paying close attention to my white blood cell count and platelets, among other things. I’m handling the chemo very well.  I look good, too, what with the healthy glow the steroids in the chemo give my complexion. I admit I don’t like losing my already thin gray hair. The chemo is designed to kill small, fast growing cells, and that’s what hair is.

This week, I had the great pleasure of Leda and Tim visiting from San Francisco. Also, it was wonderful to have visits from Ilya, Murray, and Amanda Watts. There was a light atmosphere in Chemo Room #12 today, thanks to them.

As with much in this process, I’m called on to learn, adapt, ask questions, and trust.

I will get through this.  So, for all the love I’ve been receiving, all the rich conversations I’ve been having, I’m grateful beyond words. All heart.

Round Two: Over

Round two of chemo ended yesterday. Apparently when you go in the nurses map the veins on the back of your hands like cartographers. The second round was pretty much the same as the first one, except that the feelings of tiredness have come on a little quicker this time. The hiccups are also back, but hopefully will be gone within a day or two, like they were last time. My dad is feeling OK, but taking things easy.

My dad's middle brother, Don, came up from Gettysburg, PA, last night to spend the weekend with him in New York. It's unusual, maybe unprecedented, for them to have a weekend to spend only with each other, so it's actually quite special. They kicked it off with chemo (such excitement!) and then stopped by the Container Store and Tip Top Shoes.

They have Bruna with them. It's like two men and a little lady (the movie, with those of you with kids born in the '80s). Tonight they're seeing Ilya and Don's daughter, Amelia,who is in New York interviewing for a prestigious law school scholarship to NYU.

My dad's hair is starting to fall out, which he doesn't like, but seems to have accepted ("big deal").  His friend Nadiya told him, "this is all part of your shaman's journey."

How to comment on a blog post

I've heard from a few different people that they've had trouble commenting on posts, so this is a quick explanation of how to do that.

First, scroll to the bottom of the post. In a gray bar (see below), you will see either "No comments" or "[x] comments" - click on that.

A comment box will then appear, like the one shown below. Enter your comment.

Select who you want to comment as from the drop-down menu - I recommend picking Name/URL as the easiest option. Fill in your name as prompted (no need to fill in a URL).

Click publish.

You will then be shown an image of garbled letters and numbers. Enter them in the box below to prove that you are not a robot, and click submit.

You're done! Thank you for commenting; we all love hearing from you.

Notes from the interim

My dad wanted me to post a quick update before the second round of chemo begins on Tuesday, April 2nd. He wrote:

I just want folks to know that all has gone well. During the 18 day interim period between treatments, I've worked 7 days. Not bad! When Round #1 started, I was so relieved to learn that the cancer is local to my bladder, that I experienced chemo as almost fascinating and the necessary beginning of the process to make me cancer free. I don't know how it will go this time, but I am hopeful the drugs will do their job , and I won't feel too depleted on the days immediately after this round is complete. 

I continue to be deeply grateful and energized by  the love and support of all of you along for this ride on "A Great Wagon."

He's headed up to the dacha tomorrow to spend the weekend with my mom, and then they'll both come back to the city for treatment next week. I'm including a screen shot from a recent FaceTime call with me and Tim. As you can see, he looks himself, happy and smiling.

Round One: Over

Round 1 of chemo is over, and our dad is feeling pretty alright. He's drinking lots of fluid to keep the chemo from settling in his kidneys ("the kids") and continues to report positively about the oncology nurses.

There are some side effects, such as incessant hiccuping, but he's getting that more under control. He's taking anti-nausea medication preventively, as well as a few other meds for the various side effects of the anti-nausea meds. So these things go. He's feeling well enough to continue tax prep paperwork and is planning to shoot on Sunday. The next round of chemo is scheduled to be on April 2, 3, and 4.

Today, the two of us FaceTime-d on our iPhones, which was great. I never feel too far away from my dad, because we are always in such close touch, but being in San Francisco while all this is happening in New York has, and will continue to be, very difficult. Being able to just lay eyes on him made me feel much better. We're both trying to be brave in the face of a great unknown.Your comments here, and your emails and phone calls, continue to give us all strength and courage. My dad calls them his elixir.

PET scan results

We had the best news we could hope for today: the PET scan results indicate the cancer is localized to the bladder. Strange, but essential, that one can feel happiness and relief while also having cancer.

After his meeting with the oncologist, Dr. Bajorin, our dad went in to chemo (our mom accompanied him). It sounds like it was pretty uneventful, which I think is what you want from your chemo appointments. Apparently the nurses and staff on the chemo unit are quite wonderful. My dad specifically wanted me to mention Cita, who brought clarity and humor to the appointment, which, when you consider the circumstances of her job, is really saying something. The MSK experience continues to help him feel better about how and what he is feeling. He was not even paid to say that.

Dad will have two more days of chemo, and then 18 days off. The plan is for four total rounds, which Dr. Bajorin seems to think, based on Dad's health and age, he will tolerate well.

We are all breathing a big sigh of relief. There is lots to come, we know, and much of it will be very difficult. But today's news is wonderful.

"Nice carpeting and well-appointed furniture"

Today was our dad's PET scan. This will reveal whether the cancer has metastasized anywhere else in his body. Here's what he wrote to me afterward:

This part of the hospital was like a posh conference center. Nice carpeting and well-appointed furniture. As Ilya met us in the lobby, they called to make sure I was indeed planning to come in for my PET Scan. I got injected with a radioactive isotope and then drank a watery raspberry drink to help make a good picture. This took about an hour. I read a Vanity Fair article about the man who wrote to novel "Lost Weekend," made into a multiple Oscar winner by Billy Wilder. Finally, they came and got me. I laid down on a palette and then the pretty girl warned me not to move. They slid me into the (space time) donut and proceeded to make images which Dr. Bajorin will interpret before my Tuesday morning appointment next week. Like I say, uneventful. I don't need / want drama EVERY day, now do I? Going crosstown on the M66 at the moment. Hana's up front, Ilya's standing a few feet away. I'm radioactive and not supposed to hug anyone too closely for the next 24 hours. Except Bruna.

So: waiting and more waiting. I'm glad the facilities at MSK are so nice; hospitals and treatment centers can be pretty depressing.

They go back up to the dacha tomorrow; chemo begins on Tuesday. We should have the PET scan results back by then. 

Knights Templar in the Waiting Room

Today we finally got some good news. After a brief procedure at Sloan Kettering that required twilight anesthesia (mild sedation), Dr. Dalbagni informed us that the exterior of the bladder has not attached to any tissue/organs. He then said, "On with Chemo." That was it. He is a man of few words (he is a surgeon).

My dad left the hospital today feeling pretty good. His opening line on the phone when we spoke was, "Twilight anesthesia is the BEST!"

It's small, yes. But it's the only piece of good news we've had this week, and we're all grateful for it.

This was after my mom and dad were delayed by over two hours because another operation went late. But two hours feels OK, retrospectively, when you get the news you were hoping for. My mom stayed with my dad and read to him about the Knights Templar to pass the time. As in previous visits, the MSK staff were unfailingly personable and polite. So much so that even my dad eventually wished they would just let him read in peace, another good sign. Next up is the PET scan on March 7th. My folks head up the dacha with Bruna tomorrow morning.

I am trying to actually take everything a day at a time, and not just fake it, which it what I normally do. This is something my parents have been counseling me to do for a long time, and it feels like it's finally taking. Although I am personally eager for answers and definitiveness, I'm focusing on the fact that my dad doesn't feel sick, he is himself, he always will be. We have another week and a half before chemo starts, and, since it's likely it will leave him feeling a bit fatigued, I want him and all of us to try to enjoy it.

"Their thoroughness is remarkable."

Today my mom and dad met with several urologic specialists, including Dr. Dalbagni, at Memorial Sloan Kettering. I think my dad felt very understood by them, and took great comfort in their expertise. Tomorrow my mom will pick up the photo CD of my dad's CT scan (which initially revealed the tumor a few weeks ago). On Friday he will have a second exam to attempt to determine whether the tumor is attached to any other organs. And on March 7th he'll have a PET scan to determine whether it has metastasized, so we expect to know much more after that.

The plan is to have him begin chemotherapy on March 12th, with three days of chemo followed by eighteen days off. The entire round of chemo will last approximately three months. At that point they will operate, probably to remove the whole bladder. At MSK, they do not recommend radiation to treat these types of tumors.

In my dad's words: "My overall feeling is that I went to the right hospital. Their thoroughness is remarkable."

The news

Hi, everyone.

Three weeks ago my dad went to the doctor after finding blood in his urine, which led to the discovery of a mass in his bladder. They believed it was likely to be cancer, but needed to remove the mass and do a biopsy to be certain and to decide on a course of action.

I flew to New York to be with him and my mom and Ilya for the week of the surgery, and on February 19th the mass was removed at Beth Israel hospital. The biopsy came back on Friday the 22nd. It indicated that he has a rare form of small-cell carcinoma, accounting for less than one percent of all bladder cancers, that is known for being aggressive. A second biopsy, to confirm these initial results, came in today.

Because this type of bladder cancer is so rare, there is no one accepted treatment path. My dad and mom are meeting with Dr. Guido Delbagni, at Memorial Sloan Kettering, tomorrow at 12pm to talk to him more about the prognosis and treatment. Chemotherapy, radiation, and further surgery are all possibilities.

We've created this blog, which is named for a poem by Rumi, as a place where we can update everyone who loves and cares about my dad in one central location. Please feel free to comment or reach out to any one of us directly. To be automatically notified when a new post goes up, enter your email address in the bar at the top of the page and click "Submit."

It has been an extremely emotional week for our entire family; we are so thankful for your support and your love as we cope with this new reality.

With love-
Eddie, Hana, Ilya & Leda