All posts by walking with jane

May Marathon Walk Update

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

A Hero of our own

I’ll start this month’s update with some exciting news: Our team will have its own Walk Hero this year.

Jillian raised almost $7000 last year.

Jillian Emmons, who serves as one of our NETwalkers Alliance co-captains, has been named as a Walk Hero–and as our team’s official Walk Hero partner. What that last bit means I am not 100 percent clear on, but given the small number of Walk Heroes—one for each mile—this is a singular honor for both Jillian and our team. I know you will all join me in congratulating Jillian on her appointment.

By the numbers

Our official numbers, as of this morning, have us at five Walkers officially signed up and $7,639 raised so far. That’s good for fourth place in the team standings. However, I have an additional $2,000 in donations from my latest direct mail campaign that have not yet been credited. That will not move us up in the standings—we trail third officially by about $2500—but it does keep us on the top page of the leader board. The top team has raised nearly $13,000. We’re closing in on $10,000.

…this is a singular honor for both Jillian and our team.

The standings, though, are less important than what we are trying to do for NET cancer research. Jillian’s becoming a Walk Hero creates a platform for raising awareness about NET cancer. Every new member we pick up is one more spokesperson who also helps raise awareness. Every event we hold is another opportunity to spread the message about this disease and what it does.

The personal touch

Sometime in the next two months, our local daily and weekly newspapers will run stories about my personal Marathon Walk effort. They’ll run a picture of me striding along on a training walk. But the important thing about those stories will have nothing to do with me. They will give me the opportunity to tell our NET cancer story to an audience that may not have heard it before. That chance to educate people about this vile disease is every bit as important as the money our events will raise.

Jillian’s becoming a Walk Hero creates a platform… 

A few months ago, we received a check from Safeco Insurance because of the efforts of the people at W. T.  Phelan in Belmont, MA last year. In the next few weeks, we will create a photo-op with Matt Kulke and others to formally present that $3000 check. We could just have submitted that check and moved on. But that presentation, again, gives us an opportunity to get the word out about NET cancer and carcinoid syndrome and the ongoing research the Dana-Farber Cancer Institute is doing in that area.

Create Walk opportunities

As you think about your next event, please also think about it in those terms. As I say all the time, if you need me to come talk at an event, I’ll be there unless I’m already promised somewhere else. I’m sure others on the team can make similar offers. But each of us has a NET cancer story to tell—and those stories matter.

We could just have submitted that check and moved on.

While many of you know something about Walking with Jane, the foundation I set up after my wife died, most of you only know the webpage and what we do with DFCI. In addition to that, among other things, we give scholarships at the school Jane and I taught at and at Bridgewater State University, where Jane did her undergraduate degree and some of her graduate work.

Activity ideas

This year’s recipient of the BSU scholarship is Devin Kenney—a double major in chemistry and biology, who is also pre-med. He and his brother run a small company that does reptile shows. He has offered to do a show for free for us as a fundraiser. I have no idea how to make that work, but if you do, I offer you his services. Just let me know what your plan is and I’ll put you in touch with him.

…each of us has a NET cancer story to tell…

We are also looking for t-shirt sponsors again this year. I’ll have a letter shortly I’ll send out to team members for soliciting those. Sponsor levels include: platinum for $1000—the company logo on the front of the shirt; gold for $500—the company name on the front of the shirt; silver for $250—the company logo on the back of the shirt; and bronze for $100—the company name on the back of the shirt.

Moving ahead

We already have two platinum levels from money donated last year after the shirts were printed—including Safeco Insurance—and four bronze sponsors from people who jumped the gun locally, knowing I was going to ask. You can start without my letter if you want, but I must have all sponsors in hand no later than August 15.

We are also looking for t-shirt sponsors…

Saturday, I was at a local craft fair. The weather was too nice, so we didn’t do very well, but we made a little money and we educated a few people. Next week, we will do a meat pie supper for Relay for Life and a yard and craft sale in early June for the same group. I’m working on a mini-golf tournament and a comedy show and another direct mail campaign for the Marathon Walk. And I’ll set up a booth at additional craft fairs over the course of the summer. I’m retired and widowed. I have way too much time and not enough to fill it with.

The learning process

But I’ve learned a lot about fundraising and NET cancer both along the way. I’ve learned to listen to what people are saying. I’ve learned that there are people who know how to do things I have no clue about—and if I ask them how to do it, they’ll be glad to help me figure it out. The people in the Walk office are more than willing to get you together with people who know how to run a golf tournament—or anything else—and you should use them as a resource when you can.

I have way too much time and not enough to fill it with.

And I’m always here. If I don’t know how, I’ll find you someone who does. And if no one does, we’ll figure it out together. You can always email me at walkingwithjane@gmail.com.

Facing the Walk challenge

Jillian raised almost $7000 last year. Virtually every idea she had was brand new to both of us. Some worked really well. Some crashed and burned. But the one thing I know about NET cancer patients is there is no quit in them. There’s no quit in their caregivers either.

…we’ll figure it out together.

So here are the three challenges for this month: 1.) If you are not signed up yet, get signed up; 2.) recruit at least one other person to join our team; 3.) Raise some money. With 144 days standing between us and the Walk, we just need to keep moving forward.
Talk to you in June, if not before.
Pax et lux,
Harry
Jillian (right) is a Walk Hero this year. She is also one of our co-captains.
Jillian (right) is a Walk Hero this year. She is also one of our co-captains.

Chemoembolization: my experience

Personal treatment stories, Treatments

Surgery, surgery, surgery, and Sandostatin

by Jillian Emmons

Editor’s Note: Carcinoid/NETs patients often have to make decisions about how to deal with their disease. With this piece, we launch a new series in which patients will talk about their individual experiences with specific procedures. Jillian Emmons was diagnosed with carcinoid/NETs in 2008. She had chemoembolization of her liver in February and March of 2015.

My surgeon told me in 2009 that one deals with carcinoid tumors with the four S’s: Surgery, Surgery, Surgery, and Sandostatin. However, there will likely come a time when the tumors in a patient’s liver are no longer considered operable and another route, such as transarterial chemoembolization (TACE), must be considered.

My situation

There are two reasons a neuroendocrine cancer patient might consider an embolization. The first is that the tumors, despite conventional treatments (Sandostatin or, more recently, Lanreotide), are still growing. The second is uncontrolled carcinoid syndrome.

The goal was to decrease the symptoms of carcinoid syndrome…

I found myself in the latter situation. Carcinoid syndrome varies from patient to patient, but I had uncontrolled flushing and occasionally experienced near fainting episodes. In addition to being uncomfortable and frustrating–symptoms arise when the carcinoid tumors release a large amount of hormones, and that will eventually lead to carcinoid heart disease if left unchecked.

Three ways to go

There are three types of embolization available to patients: bland embolization, radioembolization, and chemoembolization. Therapies must be tailored to each individual patient as we all have different profiles and needs.

…I had uncontrolled flushing and occasionally experienced near fainting episodes.

It was determined that radioembolization was not a good choice for me because 1.) I’m a small person and with repeated treatments would be at risk for hitting my lifetime max of radiation pretty quickly 2.) Radiation exposure is known to contribute to the incidence of cancer. If I were an older patient, this would not be a major concern, but at 35 it is something I consider greatly throughout dealing with my condition.

Arriving at my best route

Bland embolization uses beads alone to cut off the blood source to the tumors. My doctor felt that since more beads are used in bland embolization compared to the two other treatments, clogged bile ducts were more likely to occur–something that is best avoided.

Therapies must be tailored to each individual patient…

This left me with chemoembolization as the best option. As I mentioned before, I’m small. As a result, my doctor decided to use half the chemotherapeutic agent (epirubicin was the drug of choice for me, as it is more gentle on the heart than other options) that he normally would. He called this TACE-light.

Looking at the risks

As with any procedure, there are risks, which I read about in the scientific literature. Abstracts of such papers are readily available to the public. To get a complete copy of a desired paper, all one has to do is write to the author with the request.

He called this TACE-light.

To me, the risks that seemed particularly concerning were liver abscesses, liver failure, kidney failure, and death. I spoke with my physician at length about these risks and came to the conclusion I was unlikely to experience these–and the risk was worth it.

Personal situation

When papers report mortality levels, they include end stage patients whose livers are not doing well at the time of the procedure. The procedure can tip them over the edge and result in liver failure. My liver function tests were perfectly normal and, as such, I was unlikely to be in this group. I had also never had a reaction to contrast, and so was unlikely to experience issues with my kidneys from the procedure.

…the risk was worth it.

Finally, the likelihood of a liver abscess increases with tumor size. This meant the longer I waited to undergo TACE, the more likely it was that my tumors would grow–and the more likely that a liver abscess would form. In other words–if I were going to undergo this procedure, my risks were lowest right then.

So, I leaped.

First procedure prep

I arrived at the hospital about two hours prior to the TACE procedure. I was gowned up and had two IVs placed–one for Sandostatin, and one for the administration of sedatives, etc.

…my risks were lowest right then.

They offered me an Ativan pill to ease anxiety prior to the procedure. The procedure is under conscious sedation and given that anxiety can lead to carcinoid syndrome flare ups, I chose to take the Ativan to, hopefully, lower my risk for any syndrome related issues.

The insertion procedure

I remember the first procedure very vaguely. I remember the placement of the foley catheter. I remember struggling against them, so they had to try three times to place it, which is probably why I remember it. I also remember struggling against the catheter in my groin. I don’t remember any pain associated with either of these two catheters, just that they happened and I wasn’t happy about it at the time.

The procedure is under conscious sedation…

During the procedure, the patient is periodically asked to take a deep breath and hold it. This is the only other thing I remember from round one of the procedure itself.

Initial aftermath

The first night was better than expected. I used my pain pump occasionally, but this was really just for groin pain where the incision had been made. This area continued to be sore for about a week.

I remember the first procedure very vaguely.

At my facility, the required hospital stay is one night. Before I was released, I had to demonstrate a good appetite, ability to urinate, walk around, and of course the doctors checked me over multiple times throughout my stay.

On the home front

For me, recovery from TACE round one felt like a planned bout with the flu. I experienced fatigue, nausea, vomiting, and a low-grade fever over the course of about eight days after the procedure.

The first night was better than expected.

I experienced quite a bit of discomfort in my abdomen. It was hard to get comfortable without using a lot of pillows to support my body. The only way I can describe the feeling is to imagine your liver has been replaced with a large rock. It felt heavy and I was very much aware of it, though I wouldn’t qualify the feeling as pain.

Carcinoid symptoms decline

After about eight days, I felt pretty much back to normal. I continued to limit the amount of weight I lifted to about twenty pounds for the first couple of weeks post-TACE procedure.

…imagine your liver has been replaced with a large rock.

I noticed pretty much immediately that my flushing episodes had decreased in number and intensity. They were visibly less red and most of them were simply a visual occurrence and did not cause me to feel hot.

Follow-up tests

Three weeks after my procedure I returned to the interventional radiologist for a follow-up exam and blood work. I was shown images from my procedure demonstrating that it had gone technically well. Images of blood flow prior to the placement of the beads showed tumors throughout my liver.

…my flushing episodes had decreased in number and intensity.

After the beads had been placed, the tumors were no longer visible on the images as the blood supply to the tumors had been successfully blocked off. Blood tests showed that my liver function tests were perfectly normal–they are often elevated for a bit following the procedure–and my chromogranin A levels which had been hovering in the 1000-1100 ng/ml range for the past year were at 373 ng/ml. The normal range is <93 ng/ml.

Round #2

Round two took place about five weeks after the first round. This time, the left side of my liver was treated. I spoke with the nurses prior to the procedure about the Foley catheter issue and they went above and beyond to make me comfortable the second time around.

… my liver function tests were perfectly normal…

The set-up was the same, but my experience the second time was vastly different. I remember flushing during the procedure. I also remember a lot of pain surrounding the placement of the groin catheter and also when they removed it. Thankfully I had a wonderful nurse who held my hand when I needed it and got me through.

Recovery #2

Recovery the second time was much harder. I had been warned that the proximity of the stomach to the left side of the liver would likely result in acid reflux. I experienced intense burning upon lying down–and once it started, I could not get the burning to go away for a long time. I slept upright to combat that and it did the trick.

…I had a wonderful nurse who held my hand when I needed it…

There was a lot more nausea and vomiting the second time as well. I lost about five pounds after each procedure–though I was able to pretty quickly gain it back. The biggest obstacle to recovery, though, was intense back pain which left me without much sleep. I relied on the prescribed oxycodone to get me through. Back massages also helped take my mind someplace else.

Symptom relief

The second procedure once again left me with decreased flushing. Two weeks out from the procedure my blood work showed elevated liver enzymes. These levels were watched closely and quickly returned to normal. My chromogranin A level was 247 ng/ml.

I lost about five pounds after each procedure…

I will have imaging done in May to show the progress of the tumors, but I feel as though the procedure was a successful one. The goal was to decrease the symptoms of carcinoid syndrome and we accomplished just that.

Editor’s Note: None of the above constitutes medical advice. It is a story about one person’s experience with this particular procedure. Your experience and situation may be very different from what is described here. If you think you are a potential candidate for this procedure, you need to discuss it thoroughly with your doctor. Neither the author nor the editor have medical degrees.

Jillian Emmons is also a member of ourBoston Marathon Jimmy Fund Walk team. She did the 13.1 mile route last year. You can support Jillian's Walk with a donation on her Walk page or join our team here.
Jillian Emmons is also a member of our Boston Marathon Jimmy Fund Walk team. She did the 13.1 mile route last year. You can support Jillian’s Walk with a donation on her Walk page or join our team here.

 

Liver embolization–some background

Carcinoid/NET News, Metastases, NET cancer experiences, Treatments

Liver lessons

Liver embolization therapy  is a directed therapy that takes advantage of the unique vascular supply of the liver to go after inoperable cancers that form in the liver. The method is seeing increasing use in NET cancer patients because they are often not diagnosed until the metastases in the liver are well along in their development and have colonized the liver to the point surgery is not a good option.

Not everyone is a good candidate…

Unlike the other organs in the body, the liver is not primarily fed by an artery. Rather, it gets 80-90 percent of the nutrients it needs through the hepatic portal vein system before shipping that blood onto the heart to be sent to the lungs for oxygen. The oxygenated blood then returns to the heart to be distributed to the rest of the body.

Tumor weakness

The hepatic artery does carry some nutrients to the liver, but the liver is not very dependent on those supplies. Blocking it or its downstream capillaries doesn’t seem to do the liver any longterm harm. But it can do the tumors significant harm. They get all their food and oxygen coming in on that arterial pathway. They even create their own vasculature to steal supplies to help them grow.

The method is seeing increasing use in NET cancer patients…

Regardless of where a tumor forms in the body, that desire for blood flow creates a weakness in any tumor. If we can prevent blood vessels from forming, the tumor will starve to death in short order. Several different drugs are designed to try to do this (angiogenesis inhibitors)–they may be the only option for affecting the vasculature of tumors growing in most places in the body. You can’t easily block an artery that is feeding both cancerous and healthy tissue.

Enter embolization

But the peculiar way the liver works means blocking arteries is not entirely–or necessarily–a bad thing, and that opens up another avenue of attack. If we can block the small arteries leading to a tumor, then the tumor will starve to death the same way a city under siege does. There may be some damage to surrounding tissue, but that damage is comparatively minor–and the liver is very good at repairing itself.

But it can do the tumors significant harm.

Researchers have developed three methods of liver embolization: bland (TAE), chemo (TACE), and radiation (TARE). All three use small beads to block the blood supply to the tumors, but the beads are treated with drugs before being inserted in chemoembolization, and impregnated with radiation in radioembolization. The bland embolization beads are sterile, but not treated with anything. They simply block the blood supply to the tumor.

Embolization fundamentals

The chemo and radiation treated beads deliver their payloads directly to the tumor, which means less chance of damage to surrounding healthy tissue and fewer side effects than regular chemo or external radiation treatments can entail. For NET cancer, TACE beads can be treated with a number of different chemical agents, either singly or in combination; Y90 is used with the irradiated beads used in TARE for NET cancer: SIR-spheres or TheraSpheres, the primary difference being how big a dose of radiation each sphere carries.

…the tumor will starve to death…

The basic procedure is the same for all three forms of liver embolization. A small tube is inserted into the femoral artery and threaded up to the liver. That tube is then used to place the tiny beads into the arteries leading to the tumors. The doctors only do one lobe at a time. The second lobe is done about a month after the first, if necessary.

Embolization impact

Liver embolization can be repeated later if the tumors return or begin to grow again if the first round of embolization is successful. The procedure may improve the quality of a patient’s life and extend that life. But it does not work for everyone, and none of these treatments offers a cure for the disease. It can only reduce the size and number of the tumors in the liver and may provide some relief from the symptoms of the disease for a time.

The basic procedure is the same for all three forms…

There is a wide range of side effects–ranging from minor to severe, including–among the most negative–liver failure, kidney failure and death. But the more severe side effects are rare–death occurs in less than five percent of all cases, and is less frequent the more experience the doctor has with the procedure.

Good news–bad news

At least one of the side-effects, postembolization syndrome (fever, nausea, vomiting, abdominal pain, and elevated liver enzymes), occurs in most patients. Strangely, the severity of that one side-effect may be an indicator of the success of the procedure rather than an indication of failure, as those with more severe versions of it seem to have had a better reduction in tumor size than those with milder reactions.

 The procedure may improve the quality of a patient’s life…

Not everyone is a good candidate for this procedure and it should not be used if the tumors can be dealt with surgically in any event. And even for those who are not good candidates for surgery, it is not always possible. The greater the tumor burden, the less likely it is to be an option. Where exactly the tumors are in the liver also makes a difference.

A final point

The purpose of this article is not to give medical advice. Rather, it is designed to provide basic information about liver embolization for a non-medical audience. As with any medical procedure or treatment, you need to discuss your particular case with your doctor.

Until there is a cure, we'll keep walking. Come join us for this year's Boston Marathon Jimmy Fund Walk on September 27.
Until there is a cure, we’ll keep walking. Come join us for this year’s Boston Marathon Jimmy Fund Walk on September 27.

 

What’s your experience?

Carcinoid/NET News, Goals, Marketing NETs, NET Cancer Awareness Day/Month, Uncategorized

Spreading firsthand experience

walkingwithjane.org will publish a first-person piece from a NET cancer patient about her experience with liver chemoembolization in the next couple of weeks. I’m also in the process of writing a more general piece on the embolization process.

…getting your story out to a broader audience.

But that got me thinking: We have a lot of new and not-so-new treatments, procedures and trials going on that most people don’t know a lot about. It’s one thing to read a piece written in scientific language and quite another to read something by someone who has actually experienced it firsthand. I’m pretty sure there are few, if any, doctors or researchers who have taken CAP/TEM or had a liver ablation done on them.

Your experience

What I’d like to do is a series of pieces, either written by patients or based on interviews with them, about things like liver embolization and what their experience was with that procedure. As I said we have a piece coming on the chemo form of that, but pieces on bland and radioembolization experiences would be good–and valuable–to have.

…few, if any, doctors or researchers…have…had a liver ablation done on them.

The object here is to demystify the process so that patients dealing with similar choices have actual patient experiences to help them unravel what they are about to experience.

A call for writers and subjects

This is basically a call for people to write about their experiences with various treatments and procedures, as well as ideas about what you’d like to see covered.

The object here is to demystify the process…

Or you could volunteer to be interviewed by me about a specific procedure or drug you’ve experienced if you don’t want to write about it yourself.

Thoughts on starting points

Four things immediately leap out at me as clearly being of interest: bland and radioembolization, PRRT, Gallium-68 scans, and CAP/TEM–which is in trials in the US but appears to be in use in Europe more broadly. Liver ablation therapy is another possibility, though I have seen fewer patients talking about it online. If you have experience with any of these–or some other form of therapy or testing–Walking with Jane is certainly interested in getting your story out to a broader audience.

…a call for people to write about their experiences…

If you have other things you’d like to write about–or things you’d like to see written about here–don’t hesitate to suggest them. And if privacy is a concern, we can certainly take steps to keep you anonymous. Please contact us at walkingwithjane@gmail.com if you’d like to do either one.

The value of a community goes beyond emotional support. A community shares knowledge about what each of its members is experiencing. Shared knowledge is no less important than shared joy and sorrow.
The value of a community goes beyond emotional support. A community shares knowledge about what each of its members is experiencing. Shared knowledge is no less important than shared joy and sorrow.

Marathon Walker Update for April

Boston Marathon Jimmy Fund Walk, NETwalkers Alliance, Uncategorized

Ring on my finger

Death, Grief, Jane, Uncategorized

I walked off a cliff yesterday

Jane didn’t want to be buried with her wedding or engagement rings. She insisted I take them off when she died. And I did that. I told her that when she died, I would move my own wedding ring from my left hand to my right after I took her wedding ring off her finger. I didn’t do that–until yesterday, the 52 month anniversary of her death.

Jane put it on my finger…

I’ve felt that moment coming for a few months now. In February, I listened to a story on the radio in which a woman talked about the decision to take off her wedding ring after her husband’s death. Like me, she had not done it immediately. But, eventually, she realized she was no longer the person she had been–and that her ring no longer defined or even symbolized who she was. It was time.

Ring of denial

The day Jane died I fully intended to move my ring to my right hand. But I got caught up in the notifications and the paperwork–and besides, I told myself, the ring was too small to fit on my right hand; it would need to be resized first. The truth, of course, was I was not ready to stop being married–I was not ready to be a widower.

She insisted I take them off when she died.

So the ring stayed where it was for the wake and the funeral–I would make the switch at the cemetery when we left the grave. It didn’t happen then either–there had been no time to get the ring resized. At least that is what I told myself. The fact I wore Jane’s wedding ring and engagement ring on a chain around my neck for the next several months tells the emotional state I was in and why my own ring stayed right where it was.

Ring of discovery

The only reason I stopped wearing her rings was I was terrified I would break them. Every time I picked up something heavy it crushed the rings into my chest. They live in my safe deposit box now. I know no one will ever wear them again while I am alive. My executor will have to figure out what to do with them–and the rest of Jane’s jewelry.

…it would need to be resized first.

I thought about taking the ring off on our anniversary, on Jane’s birthday, on the first anniversary of her death. On the third anniversary of her death, I even went so far as to talk with a jeweler about how long it would take to get the ring resized. Periodically, I would wear the ring on my right pinky, where it fit loosely, just to see if I could bear it. Then it fell off in the back of the car when I was putting some plants in. I thought I had lost it–and realized how unprepared I was for that.

The power of numbers

September 2 of last year was our 25th anniversary–the anniversary Jane had always joked we would never get to unless we counted in dog years. I thought, briefly, about making the switch then. But even the month leading up to that date told me what an emotional tsunami the actual day would be. I took a single-serve bottle of champagne to her grave that day. I drank half and poured the rest above where her casket is buried.

 I thought I had lost it…

Fifty-two is an important number for me for many reasons. It is the number of months between death and rebirth in my religious practice. It is the day of the last readings for the dead because on that day one leaves the garden to become a child again in the physical world.

Preparations

An earthly marriage may survive death, but it should not survive rebirth. That thought came to me on Monday when I woke up. Perhaps I dreamed it. Perhaps Jane said it to my soul in the night. But I knew wherever it came from, it was true. It made this week, which I already knew was going to be hard, much harder.

I drank half and poured the rest above where her casket is buried.

On Thursday, I took my ring to the jeweler and left it there. That afternoon, they called me to say my ring was ready. It slid on easily but did not want to come off. I knew then it was the right decision. Eventually, I got it back on my left hand for one final day.

Rebirth Day

Friday was a dismal day of rain and fog and raw cold. I collected three stones from the yard, placed them in the car with the books for the final readings, my walking stick and my prayer shawl. I picked up the flowers I place on her grave each month. I drove to the cemetery.

I took my ring to the jeweler…

In the slow drizzle, I rearranged the Easter flowers, put the new flowers in the cemetery vase I had brought with me, and placed the stones. I donned my shawl and placed my walking stick against the gravestone. I did the formal readings. The pages curled in the dampness.

Ring moment

I set the books aside. I moved my ring from my left ring-finger to my right ring-finger. The drizzle diminished to a mist. I talked with Jane for a few minutes, then left three kisses on the stone above her grave with four “I love you”s.

Friday was a dismal day of rain and fog and raw cold.

As I turned to leave, a sudden wind came up and slid the shawl gently from my shoulders as Jane said good-bye. I laughed then. It was so like Jane. She always lightened even the most solemn or difficult moments.

Aftermath

I came home. I worked on some Walking with Jane things, did some reading, watched Gene Wilder and Richard Pryor in Silver Streak. My left hand feels funny where my wedding ring lived for 25 years, seven months and eight days. My right hand feels funny because of the unaccustomed weight of that ring. Both hands look funny.

I laughed then.

Until yesterday, I was still a husband, for all that Jane was 52 months dead. Today, I am a widower–and the world feels different.

Everyone is different

This is not to say that taking off a wedding ring is a magical act that immediately alleviates grief and ends all the emotional difficulties that go with the death of a loved one. I’ve had to stop several times in writing this because I could no longer see the keyboard or the screen through the tears. I’ve had to stop other times because the emotions became too strong for words.

…yesterday, I was still a husband.

I know several people who have worn their wedding rings far longer than I have and have accepted their widowhood in ways I still haven’t. For me, this morning, I see my refusal to move my ring as the symbolic denial of Jane’s death that it was. But my life is defined by symbols. I imbue things with symbolic power far beyond human norms. Not everyone does that.

Emotions and me

For most people, I think, a ring is a ring and a grave is a grave. For me, Jane’s grave is an anchor for my grief. That anchor allows me to function more or less normally in the outside world. When grief threatens to overwhelm me, I can go there in my mind. And when I stand there I can let myself feel the torrent of its soul-shattering force without being shattered by it. Like the Japanese characters in Shogun, Jane’s grave became, for a time, a box I could place my grief in when a situation demanded my focussed attention.

…my life is defined by symbols.

I don’t deal well with strong emotions, either in myself or others. But I am a very emotional person. I can either find a way to control the release of my emotions or give them full sway and let them destroy me and everyone and everything around me. The result is that I can come across, on first encounter, as cold and distant–almost heartless. Eventually, people begin to understand that cool logic is a coping strategy that makes it possible for me to function.

The power of symbols

I surround myself with symbols. In fact, nothing that remains in my life, other than people, escapes evolution into some kind of archetypal symbol with its own purpose. A hat and coat are more than mere protections against sun or cold. My dress coat, for example, is a representation of Jane and my grandfather, both of whom protected me from cold far worse than any winter wind can conjure. When I put it on, I feel their arms embracing me with a different kind of warmth.

…that cool logic is a coping strategy…

Each plant, each wreath, has a story and a meaning. Its placement in the room or on the door has a purpose that goes beyond the decorative. Giving away even the least used of Jane’s clothes was difficult because each was a part of her story–and of our story together.

A circle of gold

But a blouse, a plant, a piece of furniture, is not a wedding ring. Over the course of our marriage, my wedding ring never left the finger Jane put it on. Until the morning of her heart surgery, when she had to take it off against the possibility of her hand swelling, Jane’s had never left her finger either. She insisted no one but me would ever take it off–and that morning, I did.

Each plant, each wreath, has a story and a meaning.

My ring is a simple circle of gold. There is nothing physically fancy or remarkable about it. But Jane put it on my finger, just as I had put hers on her finger. Only she should have taken it off my finger. In her absence, it took me 52 months to figure out how and when and why to do so.

If every plant and piece of furniture has both a physical and symbolic purpose, imagine the symbolic power of a simple gold ring worn on the same hand for for 25 years, seven months and eight days.
If every plant and piece of furniture has both a physical and symbolic purpose, imagine the symbolic power of a simple gold ring worn on the same hand for 25 years, seven months and eight days.

Walk season

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The walking man

I walk a great deal. Under normal circumstances, I walk 3-5 miles every day. In the summer, as I ramp up for the Boston Marathon Jimmy Fund Walk, that number climbs until I am doing 60-80 miles a week. After that 26.2 mile effort, I taper off for a few months. Winter arrives and I am reduced to walking an hour each day in a local mall.

Come walk with me.

Walking is good for me in two very different ways. The first is physical. Walking helps me build muscle and lose the flab that winter brings with it. But a walk is also a mental thing for me. It becomes a meditation–and the longer the walk, the deeper that meditation becomes.

Walk history

Jane and I tried to walk together every day when she was alive. We would hash over the day’s events or our plans for the next day. Sometimes we would try to decide what we needed to do about the dying lawn mower or what piece of the lawn we were going to turn into a new garden bed. Sometimes we just moved in companionable silence, holding hands.

I walk 3-5 miles every day.

But the habit of walking was there for me long before I met Jane and has endured long after her death like little else that we did together. Part of that has to do with the realization that walking was a good way to raise money and awareness for the cause of NET cancer–and for other issues I care about.

MS Walk

This weekend, I will head down the road to Dartmouth. They are doing a walk for MS research. A friend from my high school days lost a sister to it, and she is part of the reason I do it. But I also see it as an investment in other lives–as I do with all these walks.

Sometimes we just moved in companionable silence…

I have a friend whose mother has wrestled with the disease for many years. I’d like her to have more years with her grandchildren. I have another friend when fights the disease every day, herself. She has two still young children. I’d like her to see them graduate from high school. I’d like to see her hold her grandchildren in her arms. Jane’s cousin has a son with an aggressive form of the disease–but he was one of the lucky ones in a drug trial. He is not cured, but the pace of the disease has slowed.

Walking the walk

Later this month, I’ll walk with a former student and her team as she walks to raise awareness about her mother’s rare angiosarcoma. It is known even less well than NET cancer. She deserves to see her young grandson grow into adolescence and adulthood.

I’d like her to see them graduate…

Next month, I’ll travel to Chelmsford to walk against Cystic Fibrosis, a nasty bit of business I’ve seen several times in my life. I’ll remember the classmate who died when I was a high school freshman–a person I did not know at all, but who placed the name of the disease in my mind. More importantly, I’ll walk with my friends Nancy and Bruce and their 30-something daughter who had a lung transplant four years ago days before her CF would have killed her. And I’ll walk in hopes my friend Wendy’s daughter, now a teenager, will live in a world where a CF patient will have the same life expectancy and quality of life as anyone else.

Hunger Walk

Next month, too, I’ll do the Walk for Hunger in Boston. I’ll do it because I know what it is to be poor–to not know where your next meal is coming from or what it will be. My sophomore year of college, I learned how ketchup and hot water can be used to make your stomach think you’ve had real food. And then things really got bad.

I’ll remember the classmate who died…

I’ve known too many people who have spent time homeless, too many people who have had to rely on soup kitchens and food pantries, too many people who’ve gone to bed hungry so their children can go to bed a little less hungry. Every mile I walk, every dollar I raise, makes an immediate difference in someone’s life that day.

Relay for Life

In late June, I’ll walk through the night at the Relay for Life of Greater Fall River to raise money for general cancer research and patient support programs. The American Cancer Society only spends 20 percent of its income on cancer research, but what they do with the majority of their money is every bit as important to cancer patients.

And then things really got bad.

A great treatment is of no use if you can’t get to where it is offered, is of no use if you have no place to stay when you get there. And cancer treatments can be both physically and mentally debilitating, as well as financially crushing. Road to Recovery provides rides to treatments; Hope Lodges provide patients and their families a place to stay during treatment; Look Good, Feel Better provides wigs, make-up lessons, and prosthetics; there is even a program that helps patients find ways to pay for treatments.

Marathon Walk

But my biggest commitment comes in late September with the Boston Marathon Jimmy Fund Walk. Most of the money people raise in that event goes into a general fund for research and patient support.

…cancer treatments can be both physically and mentally debilitating…

But teams like our NETwalkers Alliance raise enough money to determine where that money is spent. Every dime our team raises is earmarked for NET cancer research at the Dana-Farber Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors.

Walk for the living

NET cancer killed Jane, but I don’t walk for her. She’d never forgive me if I did. Rather, I walk to help the 112,000 diagnosed patients in the US for whom we have no cure;  I walk so people like my friend Jillian will see her boys into adulthood and hold her grandchildren in her arms; I walk so people like my friend Alicia will have years to spend with her husband; I walk so people like my friend Pam can celebrate her daughter’s achievements; I walk so people like my friend Beth can have the life with her husband that Jane and I didn’t get to have.

…my biggest commitment comes in late September…

And I walk so the caregivers and families of those 112,000 diagnosed patients don’t face so young the grief of losing a parent, like my friend Jenaleigh has; face the grief of losing a brother or sister, like my friends Elizabeth has; face the loss of a child, like my father-in-law has; face the loss of their beloved, like my friend Robert and I have.

Time to walk

I walk every day. I hope every step I take helps someone, just as I hope every word I write–every action I take–makes a positive difference in someone else’s life.

NET cancer killed Jane…

You can help make that difference. Come walk with me.

Come walk with me. Together, we can make a difference.
Come walk with me. Together, we can make a difference.

Difficult decisions

Death, Jane

Decisions Jane made

Some of you reading this are alive today because of a series of decisions Jane made in September, October and November of 2010. Some of you who have just been diagnosed will also benefit from those decisions–as will some people who have not yet been told they have carcinoid/NETs. The day Jane died one of her doctors told me Jane’s willingness to push beyond where she might have drawn the line had enabled them to double the sum of all knowledge about her particular form of NET cancer.

…even when we are dying.

In addition, we learned a great deal about carcinoid heart disease and how to deal with the aftermath of heart surgery in carcinoid patients. At least one hospital changed its protocols based on what they learned from Jane’s experience. They tell me people are alive today because of that.

The decisions people make

As I was reminded in Part 2 of the PBS series “The Emperor of all Maladies,” much of what we know about cancer and how to drive some cancers into the deep remission that at least appears to be a cure, came about because of the decisions of some cancer patients to put their lives on the line for science. Drugs like Herceptin and Tamoxifen didn’t find their way into common use by magic. They require knowledge and research and–ultimately–human beings willing to take a chance on a formula untried outside a petri dish or an animal study.

They tell me people are alive today because of that.

I remember clearly our first trip to Dana-Farber. I remember the drive and the elevator ride. I remember sitting in the waiting room, going over the questions we were going to ask. And I remember a young woman approaching us to ask Jane if she would give them an extra vial of blood so that they could add it to the samples they were studying in an ongoing attempt to understand NET cancer.

Making decisions

I remember Jane being hesitant at first. Her most recent blood draw, two weeks before, had been horrible. Her arms were puffy from fluid retention from the leaking valves in her heart. That made finding a vein an unpleasant adventure that only became worse in the succeeding weeks. They had almost had to milk the vein to get that sample.

I remember sitting in the waiting room…

In the end, the scientist in her won out. We had learned enough about carcinoid/NETs in the three weeks since her diagnosis to know how little anyone knew about the disease. We both knew there was little anyone could learn in time to help Jane, barring a miracle. But there was a moral imperative that had ruled both our lives for decades: Knowledge matters–and the pursuit of some kinds of knowledge is worth almost any cost.

Decisions to help

I can’t say where that imperative came from for either of us. Nor do I know when it was first evidenced in Jane’s life. In my own case, one of my most vivid memories of early childhood was taking part in the first mass polio inoculation in Pittsburgh in the early 1950s. My parents took us there, knowing there was a chance the vaccine–which may still have been in trials at that point–might not work or, worse, might give us polio.

In the end, the scientist in her won out.

There are several things that stand out in the book on which the PBS series is based–as well as in the series. The greatest of those is the raw courage of cancer patients and their caregivers–parents and spouses, mostly. We would be nowhere in cancer research without their willingness to try something new–even if that something new might kill them or their child–or might be a placebo with no more curative power than a lump of sugar.

Impact of decisions

Without those kinds of risk-takers, childhood leukemia would still kill nearly 100 percent of those children. Today, 90 percent leave the hospital cancer-free. Without those risk-takers, every form of breast cancer and lung cancer would still be a death sentence. Without those risk-takers, there would be no hope for those who deal with cancers for which we do not yet have a cure–or anything that looks like one.

…the raw courage of cancer patients…

It is not an easy thing to volunteer for a drug trial. Even when one is not in a double-blind trial, there is no certainty the treatment will work–no certainty that the dose one receives won’t prove fatal. Even when all the laboratory work says something should work, should be safe, there is no way to be sure. Not every experiment works the way we think it will.

The decisions we make

But if we are ever going to beat NET cancer–or any cancer–every patient needs to confront the disease on two levels. First, we need to work on curing ourselves. That means staying positive and taking care of ourselves, mentally and physically. But we also have to be willing to think about making sure the doctors and researchers learn all they can from our particular case, even when we are dying.

It is not an easy thing to volunteer…

That’s what Jane did. As a result, she moved things forward for many others. I hope I can find the courage to do likewise when my time comes.

Jane made a series of decisions that have made a difference in the lives of others. The decisions you make may have a similar impact.
Jane made a series of decisions that have made a difference in the lives of others. The decisions you make may have a similar impact.

 

 

Conversation matters

Death, Jane

An important conversation

Jane and I were not obsessed with death. If anything, we were too busy living to spend much time on the subject. But once every year we took a portion of a day to talk about life-threatening medical issues and what we wanted done if we were incapacitated for some reason in a way that left us unable to make end-of-life decisions for ourselves.

Have the conversation.

That discussion became considerably more intense in the days leading up to the surgery to replace the valves in her heart the NET cancer had destroyed. At the best of times, those conversations had been difficult. But we saw them as necessary long before we heard the word carcinoid–and they became even more necessary as her disease progressed.

We all live with death

Neither of us feared death. Nor did we see it as an immediate threat when we first began having those conversations in the months before we got married. Death, for us, was a piece of life–but a piece of life in the distant future. That didn’t mean we did not prepare for it as best we could. Neither of us wanted the other to have any questions about where the lines were, though, if it came on sooner than expected.

Jane and I were not obsessed with death.

As I wrote recently, death is one of the elephants in the room for NET cancer patients. But it is an elephant in the room for most Americans. It is a thing very few of us are comfortable discussing. It is as though we think that by not talking about it, we can avoid it.

Knowledge matters

After Jane’s surgery, she spent four weeks in a cardiac intensive care unit. On three separate occasions, I had to make decisions about her care because she was not in a position to make those decisions. Someone who is comatose can’t answer questions about her care. I was very glad we had discussed, as precisely as inexperienced people can, what it was she wanted done under those circumstances.

Neither of us feared death.

I discovered that the land at the edge of death is far more murky than either of us could have imagined. We had seen it as a place with clear black and white boundaries. We could not have conceived the number of shades of gray that inhabit that place until we had seen them. If intubation will buy the time it takes to solve the riddle of potentially life-ending falling blood pressure and respiration, is it really an “heroic measure?” And when the only thing keeping the body alive is a pacemaker, is there a point to letting it continue to circulate the blood?

Decision-making about care

Despite all the conversations we had about what to do, none of the decisions I confronted in those final 28 days was easy to make. But I cannot imagine having to make them without those conversations we had about where Jane saw lines–about how and when she wanted her life to end. I tried to honor what she wanted–which was not necessarily what I wanted.

…the land at the edge of death is far more murky…

Yet I also know that the vast majority of the patients on that floor had never had a conversation with anyone about what they wanted the end of their lives to look like. Nurses and doctors told us over and over how lucky we were to have discussed those issues–that two-thirds to three-quarters of the patients in that cardiac unit had never had a conversation with anyone about what they wanted if they were in a coma with no hope of recovery.

Knowing where the lines are

And I saw the results of those failures to communicate on this vital subject. The husbands’, wives’, sons’ and daughters’ plaintive tears and cries are etched on my brain forever. They didn’t know what to do–and there was no one who could legally–or morally–tell them.

I tried to honor what she wanted…

Jane and I drew our lines in different places than others might–than, likely, you who are reading this will. That doesn’t matter so long as you–as caregiver or medical proxy–know where the lines are for your loved one–and you are willing to carry out their wishes. The only way to know those things is to have that awkward and difficult conversation about end-of-life issues–and I’m not talking about funerals and burial plots.

The conversation matters

If you have advanced NET cancer you owe it to the people you love to have a frank discussion about when it is time to let you go. If you are the caregiver for a patient, there are things about what that person wants that you need to know before they are unconscious and unable to communicate their desires. You can only get that information by talking with them about those realities–no matter how uncomfortable that discussion makes you both.

I’m not talking about funerals and burial plots.

When Jane was in her first coma, someone told me she would awaken from it–but that at some point I would have to make a decision about letting her go based on the quality of life she would have if we continued. When Jane descended into her last coma, one of her doctors reminded me of what we had both said to all of them over the preceding weeks–that when a fighting chance became no chance, that it was time to make her comfortable and let her go.

The value of knowledge

So I did. And I let her go with a clear conscience, knowing she was going to Death on her own terms.

You can only get that information by talking…

The days since have not been easy. I miss her every day. But I know things would have been far more difficult if I had not known what she wanted.

Have the conversation.

Few people are ever as alive as Jane was, even when she was dying. But that did not mean we did not talk about death and end-of-life decisions--even though the conversations were uncomfortable.
Few people are ever as alive as Jane was, even when she was dying. But that did not mean we did not talk about death and end-of-life decisions–even though the conversations were uncomfortable.

We need you–all of you

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Faces of NET cancer

I follow about a dozen online NET cancer support groups. I check in with each of them for at least a few minutes every day. The stories I read in them, and the questions people ask, tear at my soul. Sometimes, they take me back to Jane’s experiences. Sometimes they open new possibilities of hope. Sometimes they tell me that someone I have come to know through their posts will no longer be posting because their battle has ended the same way Jane’s did.

…I’m not asking you for money.

I don’t comment very often. On medical issues, the doctors know much better than I do what a set of symptoms means. I try to be supportive when someone goes in for surgery or some other procedure–knowing how much those few words of support are to someone with NETs. I share these posts on those sites when what I’ve written seems appropriate.

The need to listen

Mostly, though, I listen. Walking with Jane‘s goal has always been to help patients–and the only way to do that is to listen to people talk until you understand what it is they need. Some of the most important pieces I’ve written in the last year emerged from patient concerns I first learned about by listening to what people in the groups were worried about.

…the questions people ask tear at my soul.

But there are some underlying themes in those posts that never really get addressed. They are the elephants in the living room of NET cancer that sometimes we desperately need to talk about–but are terrified to raise outside the edges of a conversation. In theater, we talk about the subtext of a script because people in real life never talk about the real issues they confront–and neither do actors on a stage.

The elephants in the room

The two biggest elephants in the room are interconnected. The first of these is we have no cure for advanced NET cancer–and very few NET cancers are discovered before they have become advanced. The treatments we have can slow tumor growth down for a time for some patients, can alleviate the symptoms for some patients. For a lucky few, those treatments can even shrink the tumors they have for a while.

…people in real life never talk about the real issues they confront…

And we have new drugs and procedures in the pipeline that may help more patients survive with a better quality of life for a longer period of time. But we don’t have a cure. We have ideas that may eventually turn into cures, but those ideas are only now getting into trials and are likely years from being proven and adopted or disproven and shelved.

Some things, you never forget

But the lack of a cure leads directly to the second elephant in the room: People die from NET cancer every day. I have seen what that death looks like. It is something I can never forget.

…we have no cure…

And it is something we each need to work to change every day–no matter how difficult that work may seem.

Walking the talk

For the last four years, I’ve walked the Dana-Farber Cancer Institute’s Boston Marathon Jimmy Fund Walk to raise money for NET cancer research. I’ve been joined by former students and by friends and families of those who have lost loved ones to NET cancer. Over the four years the groups I’ve walked with have raised over $130,000 to help fund research we hope will lead to a cure.

It is something I can never forget.

But last year was special. In April, I got a note from a young woman with advanced NET cancer. She wanted to walk with our team. She didn’t walk the entire 26.2 miles–she wasn’t sure she could. But she took on the 13.1 mile course. And she raised $7000 doing it.

Being brave because we need to be brave

By Walk Day, we had three more patients determined to walk at least part of the distance. One felt even the three-mile course would be a stretch for her–so she recruited three friends, in case she needed them, and pushed her wheel chair from the Jimmy Fund building to Copley Square. And I know of two other patients who made the journey over part of the course for the same purpose.

But last year was special.

The thing that strikes me about NET cancer patients is their bravery in the face of long–seemingly impossible–odds. They need to be brave because they know what will happen if nothing changes. Their caregivers need to be brave for the same reason.

The unkindness of strangers

For 40 years both the federal government and the cancer establishment largely ignored NET cancer because they did not see their support of it as cost-effective. That meant NET cancer patients became orphans totally at the mercy of the kindness of strangers–and there were very few kind strangers. The result of that less-than-benign neglect was likely hundreds of thousands of deaths.

They need to be brave…

And even since the “rediscovery” of NET cancer by those with resources seven years ago, the amount of funding NET cancer researchers have found still does not amount to table scraps left behind by the family dog. Last year, the total spent on NET cancer research in the US from all sources was no more than $10 million at best–and realistically likely less than $8 million.

We need everyone–starting with you

I know what NET cancer looks like. I know how crippling the diarrhea, the flushing, the panic attacks–all of it, is. But we need every patient’s help if we are going to change the landscape of NET cancer. I know the commitment of time and energy being a lay caregiver for a NET cancer patient takes. I’ve lived it. But we need the help of very caregiver if we are going to save the people we love from this vile disease.

…table scraps left behind by the family dog…

On September 20, I will take on the Boston Marathon course from Hopkinton to Boston–26.2 miles. Between now and then, I’ll write letters and do every fundraiser I can manage. I’ll talk to women’s clubs and business groups and high school assemblies.

Come walk with us

But I’m not asking you for money. I’m asking you for something more. I’m asking you to come walk with us, either on the Jimmy Fund Walk if you are here in New England, or on some other fundraising walk for your regional NET cancer program if you are not. Every NET cancer research program is dying for your help and support.

…change the landscape of NET cancer.

To quote another of my heroes, George Washington Carver: “Put down your buckets where you are.” If we are going to change the future, we all have to do more than we think we can to make it happen.

We need every caregiver and every NET cancer patient's support if we are going to find the money to cure NET cancer. Come walk with us.
We need every caregiver and every NET cancer patient’s support if we are going to find the money to cure NET cancer. Come walk with us.