I try not to get political or controversial here–but today I can’t help myself.
…people will die every day from “rare” diseases…
I don’t care how you feel about Tom Brady and the New England Patriots. I don’t care how you feel about his suspension or the fine that has been levied against the team.
Tragically stupid
But some fans of the team have started a GoFundMe page to raise the money to pay the fine. Robert Kraft is a BILLIONAIRE! If the fine is not overturned on appeal, he has more than enough money to pay it. At his level of wealth, it’s chump-change.
I don’t care how you feel about Tom Brady…
Meanwhile, there are diseases in this country killing people every day that have to crawl on the ground, like the French peasants in Dickens’ Tale of Two Cities soaking up wine spilled in a dusty street, in order to find the money to support even the most basic research.
Cancer kills
Yesterday, we lost a NET cancer patient who founded one of the earliest online support groups for people with NET cancer. She’ll get an obituary–that her family will likely have to pay for–in the local paper and some notices on Facebook and elsewhere online. Outside the NET cancer community, no one will notice. She is one of the 34 people who died of NETs yesterday. She is one of the 12,000 people–mothers, fathers, sisters, brothers, wives and husbands–who will die from it this year–most after years of suffering real pain and real indignity.
… it’s chump-change.
Meanwhile, Tom Brady and the Patriots lead every newscast. Whatever pain and indignity they suffer, pales by comparison. They will pay their fines, sit out whatever number of games are ultimately required and move on. No one will die as a result.
Sad truths
I work every day to raise money and awareness about that disease. This week, I am doing Walking with Jane’s first Form 990 EZ. It is taking hours and is so depressing that I want to quit. Last year, we did multiple fundraisers and made multiple appeals. For all that effort, we raised barely $20,000.
…years of suffering real pain and real indignity.
Oh, we generated perhaps four times as much as that–money that never came through our door but went directly to the Dana-Farber Cancer Institute or the American Cancer Society’s Relay for Life. But even $100,000 is next to nothing when it comes to serious cancer research–where even a Phase I drug trial can be a $3 million enterprise.
The Patriots Challenge
NET cancer is not, of course, the only disease we ignore in this country: neurofibromatosis, cystic fibrosis, chordoma, pulmonary fibrosis, until last year, ALS–and we’ll see how long last year’s ice bucket challenge momentum continues–and dozens of others struggle against a tide of apathy and ignorance.
…even a Phase I drug trial can be a $3 million enterprise.
I have no doubt some Patriots fans will line up to pay off the $1 million fine. They’ll go back to their lives as though they’ve actually done something important in the world.
Real issues matter
Meanwhile, people will die every day from “rare” diseases like NET cancer, children will continue to go to school without breakfast–or even dinner the night before–veterans will continue to be denied treatment for injuries they got in service to this country. Thousands of other real injustices and real issues will be ignored or swept under whatever rugs are available.
…dozens of others struggle against a tide of apathy and ignorance.
But at least the New England Patriots won’t be out a million bucks.
(Editor’s Note: The sad part of this is I like Bob Kraft. He’s done a great deal to fight cancer and fund research. He’s not the problem. The half-witted fans who think this GoFundMe project is a good idea, are.)
My advice to Patriots fans: Find a way to make a real difference in the lives of others. Paying the fine helps no one who needs help.
My garden projects all feel like “ground under repair.” My life seems the same way at times.
The garden tells a story
If one can tell the state of a man’s mind and marriage, as one of the characters in Amy Tan’s Joy Luck Club insists, my garden has told a very sad story over the last five-and-a-half years.
…and the possibilities are endless.
In October of 2009, Jane came down with the H1N1 flu. Normally, October and November were button-down months for us. We would pull out the dead annuals, divide those perennials that preferred fall separations, mulch the shrubs, clear the detritus from the vegetable garden, spread compost to let it work its way into the soil over the winter.
One thing drives out another
The flu hit Jane hard. It put her flat on her back for several days. Just as she began to recover, pneumonia sent her back to bed. On Halloween, she watched the trick-or-treaters from the window. I would not let her near the open door, afraid some chill would put her back to bed.
…October and November were button-down months…
My attention was riveted on her. I managed to mow the lawn periodically, but the rest of the yard work was beyond both of us. We left everything for spring.
The last spring
Jane stayed weak all winter, but did the spring pruning. She got up on the stepladder and cut back the Rose-of-Sharon that was–and is–the centerpiece of one bed. Normally, that was a fall project. I coaxed the vegetable garden back to life, but we bought most of the plants that year. Usually, we started the vegetables from seed so we could be certain what they were and that no one had treated them with pesticides.
We left everything for spring.
We both knew something wasn’t right. She tired easily. Every day, her ankles were swollen. She told me later there were times the world seemed to fade around her–that when people spoke, sometimes they seemed to be very far away. She kept that from everyone. She said she had promises to keep to her students.
The last summer
The garden suffered that summer. Jane’s legs were so bad she had to give up her two hours of tennis every day. Normally, I would walk for an hour while she played, then come home and weed and do the other things it takes to make a garden grow. Instead, we tried to walk together every day. When we came home, we would read and talk. The garden didn’t matter much that summer. I neglected the weeds, the rabbits and the groundhogs.
We both knew something wasn’t right.
My focus was elsewhere. I was terrified–terrified that I was losing her. I think she was terrified, too. But we hid that terror from each other. She was probably better at it than I was. I wear every emotion, unguarded, on my face.
The last fall
I did the bare and necessary minimums in the yard that fall. Walking across the lawn one Saturday afternoon my foot disappeared into a sudden sink hole nearly to the knee. It was the only time that Jane was sick that I let my anger out. The air got an earful. All the anger I felt about the cruelty of what was going on with her spewed out in a handful of words before I got control.
The garden suffered that summer.
Jane died just over a month later. The hole in the ground stayed marked, but unrepaired, until spring. I am still dealing with it.
Ground under repair
I’ve made abortive efforts in my garden every year since. The first spring, I pruned the Rose-of-Sharon. I found a hummingbird nest in it and started off the ladder to tell Jane. The realization she was not there shattered me. I went through the motions of putting some plants in the ground, but my heart was in none of it.
I am still dealing with it.
Nearly two years ago, I started putting a fence around the garden to keep the groundhogs out. Last year, I managed to prune the plants in two of the foundation beds and plant two small trees. I kept starting landscaping projects, but never seemed to finish any of them. Every inch of every bed looked like ground under repair.
Two kinds of people
They were a perfect reflection of my life, my mind, my heart, and my soul. Their unfinished state is a perfect metaphor for every other aspect of my existence.
The realization she was not there shattered me.
A friend of mine once said there are two kinds of people in the world: those who want to die with everything done and those who want to die with a thousand things still to do. I must fall into the latter category: I have a foundation to fight Jane’s cancer that always has at least three new projects hanging fire–and whose government paperwork seems endless; I have the beginnings of two novels, a book on journalism, a book on mourning all started and in various stages of completion; I have three landscaping projects in progress and plans for another three in mind; and then there are rooms to paint, carpet to replace, and a basement to clean out and rework into the office Walking with Jane really needs.
Something changed
There are times, even now, I am overwhelmed by all of it. But somewhere in April, something changed. Part of it was the 52-month rebirth ceremony I celebrated alone in the rain at Jane’s grave. I felt the way people say you are supposed to feel after the funeral–but never do if you are the spouse or the children. The weight lifted and I could see the world of possibility again.
Their unfinished state is a perfect metaphor…
But part of it was also finally getting into the garden as something more than a chore. I started April determined to get all the beds truly cleaned out for the first time since the fall of 2009, determined to finish the groundhog defense system, determined to finish the enlarged bed around the mailbox with the perennials I spent the winter raising from seed. Each day, I made–and saw–visible progress.
Seeing instead of thinking
In mid-April, I realized I was no longer thinking about the gardens–I was seeing them as they would be; I was sleeping the night through–and no longer awakening from strange and troubling dreams; and the lists I made of things I wanted to do had fewer and fewer tasks unfinished at each day’s end.
…I could see the world of possibility again.
I still have awful days. Sunday marked 53 months since Jane’s death and I got lost in her grave for quite a while that day. I built her a planter of white geraniums, white impatiens, and purple petunias–that last a gesture to her mother who is buried beneath the same headstone.
Seeing the future
When I came home, I did some housekeeping and moved some furniture around. But this time I was not trying to forget my pain in those things. An engineer was coming Monday afternoon to look at the house for solar power. He needed to be able to get to the attic and be able to see some things that are tucked behind the furniture.
I still have awful days.
Finally, I am seeing glimpses of the longer future and there are things I need to do to prepare for it. For both of us, it was important to live our values and beliefs. Our gardens were a symbol of those things–as those solar panels on the roof will be.
The garden and the soul
Our gardens did not just feed the body, they fed our souls. I forgot that somewhere in the last few years. Neglecting them was evidence of how badly injured my soul was when Jane died. They’ve tried to nourish me despite how badly I’ve neglected them. And now that I am truly paying attention again, the dividends are greater than I could have imagined.
…I am seeing glimpses of the longer future…
The ground is still under repair–both in the garden and in my life. Truth be told, they always were–and they always will be.
The garden universe
But if a garden is truly the image of a man’s soul, then mine seems to be in healing and growing mode: the stone paths in the vegetable garden are nearly finished; the peas and onions and radishes are out of the ground, the tomato transplants are doing well and the eggplant is ready to move from the cold-frame to the garden; the day lily transplants have taken hold, as have the coneflowers and alyssum; last year’s hydrangea and lilies have sprouted; the azaleas are in bloom and the peonies have formed their flower buds.
The ground is still under repair…
For the first time in years, my heart feels light–and the possibilities are endless.
The vegetable garden rebuilding project is nearing completion. I still have some stone to move–and I may need more than I have. But I am making progress.
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.
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.
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.
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.
It’s building toward a beautiful day outside–great weather to be training for the Boston Marathon Jimmy Fund Walk. I started my serious training last week. At my age, it’s start early or pay for it later–as I discovered last year. So far, we have five Walkers signed up–four from last year and one new.
If you haven’t signed up yet, today would be a good day to do so. Walk organizers have announced a new incentive I’ll get to in a moment. Our goal this year is 60 Walkers–and we have a long way to go before we get there. If you use the code word TEAM you can get $5 off your registration fee.
Building on last year’s foundation
We moved comfortably into the top 25 teams with last year’s effort. We were in the top 10 Honor Teams for the year as well. Jillian Emmons was ninth among first time walkers, and we had eight Pacesetters among our 48 walkers.
The Walk Chair, Zack Blackburn, and Quincey Spagnoletti have gone out of their way to be helpful as we work toward moving to six figures this year. I’ve spent some time talking with the captain of Team Neuro, which routinely raises over $125,000 a year, picking her brain about how they consistently do what they do.
Where we are
Her emphasis was on recruiting lots of people for the team. And so far, we are slightly ahead of where we were at this point last year. But we are behind on money raised to this point. That’s largely my fault–I’m $6000 behind where I was this time last year because my winter fundraising letter didn’t get out until last week.
I’ll make up that ground in the next few weeks, but if we are going to make that six-figure team goal this year, we’re going to need to build up our Pacesetter roster as well as our membership roster. So here’s that incentive I talked about earlier: be one of the first 100 participants to reach Star Pacesetter (raise $1,500 or more) to earn two tickets to the July 26 Boston Red Sox vs. Detroit Tigers game. Make sure you check out the How to Raise $1,500 worksheet.
The road ahead
Here’s a to-do list for the next few weeks:
1. If you have not signed up yet for this year’s Walk, do it today. Remember the code word TEAM will get you $5 off your registration. If you were a Pacesetter last year, you need pay no registration fee this year.
2. Make sure you have changed the date of the Walk on both your page and your personal calendar. The Walk is officially set for September 27. The original materials said September 20.
4. Start your own fundraising projects. Remember, I will come talk to any group or fundraiser you put together. Just let me know where to be and when. You can also use the letter in my welcome letter or use it as a template for your own. My letters routinely raise $3-5,000 for my Walk.
Team Building
5. Recruit other Walkers. The more Walkers we have the larger the amount our team will raise.6. Visit our NETwalkers Alliance Facebook Page to read what others are doing and post what you have planned.7. Let me know if you want to be a co-captain for a particular region or distance. Because of our past record and the size of last year’s team, they are letting us have some extra captains to help us stay organized.
Staying in touch
That’s all for this month. My plan is to put out an update once a month for everyone on the team.
As always, if you have questions or need anything else from me, feel free to email me (walkingwithjane@gmail.com or hproudfoot@verizon.net)
Liz and Beth walked–and ran–the full 26.2 miles last year after my knee cut me down to the 13.1 mile course. You can walk any of the four routes–but we need you to join us.
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 25 years, seven months and eight days.
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.
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…
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.
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.
