All posts by walking with jane

My experience: surgery and progression

Metastases, NET cancer experiences, Personal treatment stories, Treatments, Uncategorized

(Editor’s note: This is Part 2 of Beth R. McGivern‘s piece on her experience with NET cancer. In Part 1, she talked about her experience with the initial diagnosis of her disease and her decision to take part in the Gallium-68 PET scan trials. She detailed her experiences with that scanning method, as well. In Part 2, she talks about her decision to have surgery, and her recent discovery that her disease is progressing again.)  

DFCI weighs in

I went to Dana-Farber (DFCI) in early 2013 for a consult. Dr. Jennifer Chan was very clear and honest about my situation– it was the first time that I felt I was hearing the whole situation and potential consequences of my decisions. She said that the large tumor was already pressing in on my small intestine–she showed it to me on a CT scan slice–and that there was near certainty that I would have a bowel obstruction due to that tumor at some point in the future.

Hopefully, the progression will be slow. 

This was quite similar to Dr. Liu’s opinion, except she was an oncologist, not a surgeon. She set me up to meet with a surgeon and said that Dana-Farber was not going to do a huge, long surgery to get most of the extensive tumors out. They would take out the large tumor and the part of my small intestine that was causing the problem and whatever was nearby, but would not take out the smaller, more widely spread tumors. The surgery would be 3-4 hours.

Moving forward

At that point I had three opinions for surgery and two for watch and wait. I met with the surgeon, was convinced that this was a necessary step, and moved my care to DFCI. I was still nervous about the surgery and waited until after the summer because I wanted to be healthy for my niece’s wedding in August.

They would take out the large tumor…

I had the surgery in September, 2013 and they removed about 90 percent of my tumor load.   During the surgery they removed two large tumors (the one hanging from my liver and a pelvic tumor that was about 6.6 cm) plus about 100 cm of my small intestine.

Surgery impact

Also removed was a 1 cm tumor in my right ovary and the corresponding fallopian tube.  The doctor did not remove my gallbladder which is ok with me because I’m not having any trouble with it. The surgeon said that he got more than 90 percent of the tumors out, which is excellent.

I was still nervous about the surgery…

The surgery was large; I had tubes coming out of every orifice and I was in the hospital for six nights. The recovery took a long time.  Long term effects of the surgery have been difficulty with nutrition absorption, frequent bowel movements and some loss of bowel control.

Post-surgery, I continued on Sandostatin LAR with semi-annual scans–and things remained status quo until this March. Then it finally happened: the dreaded news of cancer progression. After 4+ years on Sandostatin LAR and the debulking surgery, my remaining tumors have started to grow and progress. The good news is that there are no new visible tumors.

Progression

This March, my MRI showed tumor progression in my liver and one of my lymph nodes.  We increased my dose of Sandostatin LAR from 20 mg to 30 mg in March, hoping that might slow down any further progression. My doctor wants to do another MRI in July to see if the tumors are still progressing. In July, if the tumors are stable, we’ll just continue with the 30 mg Sandostatin LAR.

…my remaining tumors have started to grow…

Since there are no approved drugs for mid-gut NET patients who have progressed on Sandostatin LAR, Dr. Chan mentioned some clinical trials that I might be well suited for that are going on at Dana-Farber:

  • Immunotherapy Phase 1B trial of MK-3475 for patients with advanced solid tumors
  • Angiogenesis inhibitors (a new form of chemotherapy)–there are a few choices for me in this category

Immunotherapy?

The immunotherapy trial sounded interesting.  MK-3475 is the immunotherapy drug that has been used in advanced melanoma patients that has put some of them into remission.  It works by targeting a protein called PD-L1 that allows the cancer cells to live and multiply without disturbance from the immune system.

We increased my dose of Sandostatin LAR…

MK-3475 is a drug that blocks the PD-L1 protein so that your own immune system can attack the tumor. Basically, if my tumor tested positive for PD-L1 then I would be eligible to try this clinical trial to see if the drug would work for my NETs.

Other options

Unfortunately, my tumor was not positive–and from what I understand, none of the NET tumor samples tested positive.  I guess it means that this particular pathway to immunotherapy does not work for NETs – and from what I’ve heard, most other gastrointestinal cancers. So if the tumors progress further, it’s on to angiogenesis inhibitors for me.

The immunotherapy trial sounded interesting.

These drugs have dissimilar side effects from most conventional chemotherapy medications because they work very differently. Rather than killing healthy cells along with cancer cells, as many chemotherapy drugs do, angiogenesis inhibitors only prevent new blood vessels from forming.

Fighting angiogenesis

At this point, there are no FDA approved angiogenesis inhibitors for mid-gut NETS.  For pancreatic NETs, Sunitinib (Sutent) and Everolimus (Afinitor) are approved. The clinical trials that my doctor presented to me are for two drugs:

  • Cabozantinib:  This is a phase 2 trial of a drug that is already approved for thyroid cancer.
  • Aflibercept:  This is also a phase 2 trial of a drug that is already that is approved for colorectal cancer.

…angiogenesis inhibitors only prevent new blood vessels from forming.

Both these drugs, like all cancer drugs, have multiple side effects associated with them.  All things being equal–and I don’t know if they are–I’d take the Cabozantinib because it is available in pill form rather than as an infusion. Neither of these clinical trials is randomized, meaning that there is no placebo arm, so if I do one of them, I will definitely be getting the real drug.

Considering options

My issue with angiogenesis inhibitors is that they seem to work better for pancreatic NETs than for mid-gut NETs.  My feeling is based on some articles I have read and the fact that they are only FDA approved for pancreatic NETs. My doctor generally agrees with me, but believes that the inhibitors may still work for mid-guts, just not as well as they do for pancreatic NETs.

…I will definitely be getting the real drug.

She also suggested taking Afinitor on an off label basis, meaning that it is not approved for my specific condition. It is already approved for pancreatic NETs, so if I took Afinitor, at least I would not be subject to the rigorous rules of a clinical trial. Novartis released information last week about a phase III trial called Radiant-4 that showed Afinitor met the trial goals for gastrointestinal and lung NETs. This study might be enough for the FDA to approve Afinitor for other NET types than pancreatic.

Into the future

I asked her if we should consider peptide receptor radionuclide therapy (PRRT). She said that this could be a possibility at a later stage. At this point my tumor load is light and I don’t have too much carcinoid syndrome. The angiogenesis inhibitors make sense to see if that helps slow progression.

She also suggested taking Afinitor…

My doctor thinks that there may be PRRT trials available for mid-gut NETs in the US in the next year. It may make sense to partake in that treatment. I could also go to Europe for PRRT, where they are much farther along in the development of this therapy. I have some time to think about this as I wait for my disease to progress. Hopefully, the progression will be slow.

(Editor’s note: Beth R. McGivern walks on our NETwalkers Alliance Jimmy Fund Marathon Walk team. All funds raised by that team go to support NET cancer research at DFCI. If you would like to donate to Beth’s walk, you can do that here. If you would like to join our team, you can do that here.)

For most, surgery only offers time for us to find a real cure for NET cancer. Working together, we can end NET cancer.
For most, surgery only offers time for us to find a real cure for NET cancer. Working together, we can end NET cancer.

My experience: Gallium-68 scan

Metastases, NET Cancer Awareness Day/Month, NET cancer experiences, NETwalkers Alliance, Personal treatment stories, Treatments

(Editor’s Note: This is the first of two parts of a piece Beth R. McGivern has written about her NET cancer experience. In this section, she talks about her diagnosis and her experience with the new Gallium-68 scan that is nearing the end of trials in the US. In the second part, she talks about her surgery and the drug trials she is now considering. That piece will run here the end of next week.)

by Beth R. McGivern

Discovery and questions

In 2010, I was diagnosed with widely metastatic disease with tumors all over my abdominal and pelvic area, the largest being a 12x10x8 cm tumor hanging from my liver. Surprisingly, there were only a few very small tumors in my liver.

…the expert opinions were so divided as to what I should do.

My first specialist started me on monthly Sandostatin injections but did not believe I should have surgery. I then had another specialist review my case through a second opinion service sponsored by my employer. This doctor also did not believe I should have surgery.

Scanning options

I was quite dissatisfied with my first specialist so I changed to another doctor and they suggested that I have an octreoscan, which I had never done. I had heard that there was a better scan called a Gallium 68 PET (68-GA) that was much better at detecting tumors than the octreoscan. This doctor thought I should have a de-bulking surgery and the octreoscan would help define my tumor load and surgical plan.

My first specialist started me on monthly Sandostatin...

The FDA has not approved the 68-GA PET as a diagnostic test in the US at this point. At the time of my investigation, the closest place to get into a clinical trial for a 68-GA PET was at Vanderbilt University in Nashville, TN. The problem with the clinical trial was that it would not be covered by standard medical insurance.

Goals and fears

The goals of this test were 1) to get an accurate idea of my tumor load, 2) to see if I had the receptors that would make some of the radiopeptide therapies available in Europe a treatment option for me and 3) to get another opinion about how I should treat my disease.

The FDA has not approved the 68-GA PET as a diagnostic test…

In July 2012, I had my appointment with Dr. Eric Liu, followed by my scheduled 68GA PET scan. This was my first scan other than a CT. I was nervous about being injected with a radioactive tracer–it just sounds a bit scary.

Last in line

Dr. Liu was very articulate and professional and spent a lot of time with me. I was very impressed with my experience at Vanderbilt-Ingram Cancer Center. Dr. Liu talked about my experience to date to gather some history. He said the 68GA PET scan would answer two questions: 1) Do I have appropriate receptors for the scan to work? 2) What is the extent and location of my disease?

…it just sounds a bit scary.

The doctor said I was the last of the 50 patients that were in this clinical trial. He also mentioned, that he would appreciate it if I made a $2,000 contribution to Vanderbilt. The money would allow him to continue this important work to secure FDA approval for this scan in the US. This cost was explained to me up front before my appointment, so there was no surprise here.

Pre-test procedure

Dr. Liu said the injection should not hurt or cause any side effects–but an EKG was required before and after the scan. He assured me the radioactive tracer has a very short half-life and that I would be fine going through airport security the next day. We also discussed my doctor experiences in NYC, some of which had been “suboptimal”, and how it might work if I were to use him to treat my disease since I live so far away.

…I was the last of the 50 patients…

The prep for the scan included the EKG and the 68GA injection. Then I drank the same large container of barium contrast that I have had for all my CT scans. This process took about an hour. The injection did not sting, burn or cause any adverse consequences.

The scan experience

The PET scanner is similar to a long CT scan machine. The drill is that you have to lie on your back with your arms above your head and not move for about 30 minutes. The machine does not tell you to breathe in and out like the CT scanner does.

The injection did not sting…

Some people have issues being put into the enclosed tunnel-like machine but I just kept my eyes closed and tried not to move. Dr. Liu came into the room while the scan was going on. This surprised me as I had my eyes closed. He encouraged me to stay still and that I was doing a great job. It was a nice pep talk.

Scan results

After the scan was over I went for the second EKG and then to lunch.

It was a nice pep talk.

Later in the afternoon, we met again with Dr. Liu. He said he did not have the report yet but that I was positive for the receptors and although I have extensive disease there is no evidence of metastatic disease outside of the abdomen/pelvis.

Surgical questions

With the help of a radiologist, Dr. Walker, we reviewed the scans. The CT scan was right beside the 68GA scan on the computer screen. It was quite amazing, though I had no idea what we were looking at. The doctors said I had very low liver involvement with one definite liver metastasis to the right lobe and a possible metastasis to the left lobe.

…I was positive for the receptors… 

The largest tumor hanging from my liver would most probably cause a bowel obstruction should it grow. There was also, they said, multifocal small bowel disease. That is where the primary tumor is located.

More surgical questions

Dr Liu said that he definitely thought that this was resectible because all of the tumors are in the abdomen and pelvis, i.e., not bone, brain or other mets. Surgery, although not curative, would mean that I would most likely die of something else other than carcinoid cancer.  He described the surgery as major– probably six hours in the operating room with a 6-8 week recovery period.

…I had very low liver involvement…

Dr. Liu was the third carcinoid specialist that I had seen. Two had recommended taking Sandostatin and “watch and wait.” I took Dr. Liu’s surgical recommendation  lightly as he is a surgeon and they usually recommend surgery.

Looking for answers

I was seeing another specialist in New York who was also recommending surgery and putting some pressure on me to do this, but I was uncomfortable because the doctor was not being clear as to what the surgery would entail or the rationale for it. Also, I was not comfortable with a giant abdominal surgery when I had no symptoms and the expert opinions were so divided as to what I should do.

He described the surgery as major…

At this point, I had two opinions for surgery and two for watch-and-wait. Later in 2012, I went to a conference sponsored by the New England Carcinoid Connection support group in Boston and heard some of the doctors from the Dana-Farber Cancer Institute speak. I thought they were more conservative and concerned with quality of life issues than most of the other doctors I had been to. I decided to get my fifth opinion there and that would break the surgery-or-watch-and-wait tie that I was in.

(Editor’s Note: Beth R. McGivern is a member of our NETwalkers Alliance Boston Marathon Jimmy Fund Walk team. You can make a donation to her Walk effort here.)

Together, we can do anything--nothing is impossible. Let's cure NET cancer.
Together, we can do anything–nothing is impossible. Let’s cure NET cancer.

Designs for Relay Zebra Herd

Fundraising, Marketing NETs, NET Cancer Awareness Day/Month, Uncategorized

Here are the base designs for the Zebra Herd Flash Mob I talked about in yesterday’s post.

The portrait of Jane will alternate with the bags that say Kill NET cancer before it kills someone you love.

On the patient and memory bags the names will most likely be handwritten.

Here are the basic designs for the Zebra Herd Flash Mob at Relay. Please note that names will likely be handwritten.
There is still time to put your name or the name of a loved one into the zebra herd we will rally for Relay a week from Friday. It doesn’t matter where you are from. Relay is a global event.

Kill NET cancer in memory of Jane portrait for bags Kill NET cancer for

Creating a flash zebra herd

Uncategorized

Creating a herd flash mob

Some years ago there was a concept making the rounds called a “flash mob.” People would text a large group of people to appear at a specific location at a specific time to call attention to something important–or just to do something out of the ordinary. It was an early use of the viral nature of the electronic social commons.

…we can’t start something big.

Two weeks ago a friend on the planning committee for the Relay for Life of Greater Fall River reminded us that we should have far more luminaria at our Relay than we traditionally have. We are supposed to have one luminaria for every $5 we raise. Generally, our event raises over $200,000–which means we should have something on the order of 40,000 of them. I doubt we have more than 4000 total.

Lighting up the herd

For those unfamiliar with Relay for Life, a luminaria is a plain white bag decorated in the name of someone who is either a cancer survivor or has died of one form or another of cancer. The bags are set out on the track and filled with a small amount of sand to keep them from blowing around. Then either a glow stick or candle is placed in the bag and ignited just after dark.

I doubt we have more than 4000 total.

The idea originated early in the history of Relay when a group was walking the all-night event at a track that lacked lighting. The walkers needed to be able to see where they were going and the bag-lanterns provided that.

1200 herd lights available–free

Our Walking with Jane Relay for Life team is as guilty of not putting out the number of bags we’ve earned as anyone. When all was said and done last year, we were entitled to about 1800 bags. If we put out 20, I’d be surprised. As I write this, we have earned the rights to close to 1200–most of which were unlikely to be used again this year.

And then I was out mowing the lawn this weekend. I think about a lot of things behind the mower. Sometimes, it is so much nonsense. Sometimes, it becomes a meditation. And sometimes…

Struggles in the herd

I monitor a dozen NET cancer support groups online. I witness the daily struggles of probably 2000 NET cancer patients. They talk about their symptoms, their experiences in various trials, their families, the obstacles they face, their hopes and their dreams. I come away from that daily sojourn deeply moved.

…we have earned the rights to close to 1200…

I care about every one of those patients and their families. When one of them dies, I feel it. And in the last few months there have been too many deaths. Each one underlines for me how important it is we find a cure for NET cancer–how important it is that we raise awareness among the general public about this form of cancer.

Herd opportunity knocks

And here I am with enough  unused luminaria to ignite a very large bonfire capable of warming a large number of zebra hearts. It’s time for a figurative flash mob.

I witness the daily struggles…

Here’s the plan: I am going to create 1200 zebra-themed luminaria bags, secure in the knowledge that we have at least that amount already coming in over these last days before Relay on June 26. At the top of each bag it will say either, “Kill NET cancer for” or “Kill NET cancer in memory of.” Under that will appear a person’s name who either has NETs or has died of NETs. Below that will be a zebra.

Creating the virtual herd

We’ll mass those 1200 bags together in one section of the track to create an enormous zebra herd that will be impossible to miss. And in the middle of that herd will be bags that read: “Kill NET cancer before it kills someone you love.”

It’s time for a figurative flash mob.

We don’t need money to do this. We’ve raised enough to do it already. What we do need are names of patients and lost loved ones. I can generate quite a list of first names, if it comes to that. But if you are a patient and would let us use your first and last name, that would have greater impact–as would permission from people who have lost loved ones to NETs to use those names. Just leave a comment below with the name and I’ll get it on the list that will go on the bags.

Spreading the herd word

My hope is that the local press will pick up on the story of that zebra herd and that the press services will pick up on it and spread it around. Maybe NET cancer focussed Relay teams around the country will pick up on the idea and use it at other Relays.

We’ve raised enough to do it already.

Ultimately, this is about raising awareness about NET cancer. Greater awareness will lead to earlier diagnosis–and early diagnosis can mean a surgical cure is still possible. Greater awareness may also lead to greater interest in the cancer research community–and that may generate more research that may lead to a cure sooner rather than later.

We talk about our zebra herd among ourselves. Join the zebra herd flash mob for the Greater Fall River Relay for Life. Let’s see if we can’t start something big.

Relay creates an opportunity to create a flash herd. We should take advantage of that.
Relay creates an opportunity to create a flash herd. We should take advantage of that.

Month fifty-four

Death, Goals, Grief, Uncategorized

Month vs. year

I wanted to call this piece “Four-and-a-half years,” which is the same as fifty-four months in terms of time, but not, somehow, in meaning. With a child, we draw the line around 48 months. With death–at least with Jane’s–it appears to be different.

Jane’s life was an unequivocal success.

My father died almost a year ago. My mother died 10 months before Jane did. I lost a good friend to triple negative breast cancer just over a year ago. I have no problem talking about their deaths in terms of years. Of course I didn’t spend the last month of their lives in a hospital room holding their hands, either.

A month of deaths

The last month has been a difficult one in my corner of the carcinoid/NETs community. Half-a-dozen patients I’ve become close to–two of them significant figures in creating foundations and support groups–have killed their NET cancer the same way Jane did: by dying and taking it with them. I’ve done what little I can for their spouses and loved ones. It never seems as though it is enough.

…it appears to be different.

Nothing I do ever seems like enough. Friends tell me I can only do what I can do–that one person can only do so much. And intellectually, I can agree with them. But my heart can’t accept that. I’ve seen too much pain and too much suffering and been unable to do much to alleviate either one. My Buddhist training tells me I should take a very different lesson from that than I do. I am not a very good Buddhist.

What I wake up to

My Taoist training insists there is little constructive I can do–that waiting is. I am not a very good Taoist. The Christian part of me talks about all of this being part of the divine plan. I am a lousy Christian. If killing people with this hideous form of cancer is divinely inspired, I want no part of that divinity.

It never seems as though it is enough.

There is a sign on the wall opposite my bed. It is placed so it is the first thing I see when I wake up in the morning. It says, “It is never too late to be what you might have been.” It reminds me that the failures of the day before are no reason to give up on the work of today. It refuses to let me set down the work I have adopted as my own. It refuses to let me stop striving to embody what I believe.

A month for change

I accept that suffering exists in the world–but that does not mean I don’t try to ease it for others where and when I can. I accept that there are things I may not be able to change, but I try to change them anyway because I cannot know what is impossible until I try. Divinity can want what it wants; I can only do what my heart tells me is right. I am more concerned with humanity than I am with the needs or desires of any god.

It is never too late…

People tell me constantly how pleased Jane must be with what I am doing. I do none of what I do to make her happy.  Jane is far beyond my ability to make happy or sad now. It is not that I love her less than I did when she was alive, but our work was for–and with–the living–and my work still is.

A month of frustration

I feel frustrated this month. The anniversary of Jane’s death was much more difficult this month than last. All the deaths of the last month have taken me back to Jane’s last days over and over again.

I am more concerned with humanity…

Financially, Walking with Jane is running behind last year’s numbers. In terms of raising awareness about NET cancer, our efforts seem stalled because I can’t figure out how to extend our reach. The goals I set at the beginning of the year seem to be sliding out of reach. I’m having trouble getting pieces of writing to work–and my book on grief is the worst of it. I feel mentally constipated and my usual laxatives are not working very well. Even the garden is struggling.

Judging a life

But I am too stubborn–or too stupid–to quit. It doesn’t matter which it is. Last night I had a series of dreams about individuals solving problems that improved human lives. Most of them were nameless folks who saw something that needed to be done and did it. They were frustrated at times, too. But they kept working at whatever it was. Sometimes they solved the problem. Sometimes, they created the groundwork others built on. Sometimes, they failed completely.

…our efforts seem stalled…

At the end of Oedipus, Rex, one of the characters says we should never count a person’s life as happy or sad until we have seen the end of it. Equally, we should never consider a person’s life as successful or not until we have the whole body of that life to look at. Jane’s life was an unequivocal success. But my life is not over and no one should judge it one way or the other until it is–including me.

Jane still lives in my heart. No month goes by that is not filled with memories of our life together. But memory cannot get in the path of progress--or at least it cannot be allowed to prevent progress.
Jane still lives in my heart. No month goes by that is not filled with memories of our life together. But memory cannot get in the path of progress–or at least it cannot be allowed to prevent progress.

We have been hacked

Uncategorized

Dear friends,
Apparently someone hacked the Walking with Jane website last night. I am working to solve the problem and hope to have everything up and running properly again shortly. I am sorry for the inconvenience to those of you who subscribe to our posts whether directly from here or through Facebook.

If you happen to be the hacker, please know that you have interfered with the lives of cancer patients–not that it matters to you, I’m sure. My temptation is to say, “May their misery rebound upon your heads a thousand-fold.” But I pity the pathetic people you must be to need to get your jollies–or your paychecks–from the misery of the truly ill.

My faith teaches that I must be forgiving of even the truly evil. But I would suggest you give this up before you encounter someone less forgiving.

My apologies to those of you who have come to rely on this site for information about NET cancer and the ongoing efforts to find a cure for it. I’ll be back after I’ve taken the steps necessary to eliminate this annoyance.

–Harry Proudfoot

Killing what killed Jane

Carcinoid/NET News, Goals, Jane, Uncategorized

A long-delayed meeting

We had our long-delayed Walking with Jane Board of Directors meeting yesterday. We normally meet the second Saturday in January but I had oral surgery scheduled for two days before that date this year, so we moved it later in the month. Then it started to snow. And the further we moved into the spring, the more scheduling conflicts erupted.

My focus needs to reflect that reality.

I understand now why our lawyer advised limiting the board to three people. The problem was I wanted a wide range of expertise and opinion in that group. We ended up with six trustees plus me as chairman. And yesterday, we had serious discussions about the need to expand the board to include people from outside the immediate area. For now, we have put that idea on hold. But in light of some other things we decided thereafter, it is an idea I expect we will return to very soon.

Decisions made

The formal meeting lasted over three hours and included decisions on a mini golf tournament tentatively scheduled for late August, a regular fundraising dinner schedule, a comedy night, ideas for a new public service announcement campaign, acceptance of an offer from Amazon.com to donate a percentage of some sales to Walking with Jane, and a revised corporate sponsorship program.

Then it started to snow.

I’ll write more about each of those things as we get them set up. But the lion’s share of our time–and the main subject of this post–focussed on our goals and our vision for where we want Walking with Jane to go over the next few years. The more we talked the more clear it became that we all felt we needed to refocus our energies on our original reason for starting Walking with Jane.

A brief history

If you’ve followed Walking with Jane for any length of time, you know Jane’s story and you know why, eventually, we set up Walking with Jane. In brief, when Jane was diagnosed with NET cancer in August of 2010, her doctor had never heard of it. When I went online to look for information, there was very little to be found–and much of what I did find was written in doctor-speak. Her first oncologist had heard of it, but never seen a case. She sent us to Jen Chan at the Dana-Farber Cancer Institute.

…we all felt we needed to refocus our energies…

The week after Jane died, one of her doctors called to tell me Dana-Farber was forming a program aimed specifically at carcinoid/NETs. They asked me to be a part of what they were doing–and I agreed. But I have never been one to put all my eggs in one basket–and our friends agreed with me. We wanted to do more.

Past as prelude

So we set up Walking with Jane–first as a Relay for Life team and later as a non-profit. Our goals, from the start, were three in number: first, to raise awareness about carcinoid and NET cancers among both medical professionals and the general public; second, to increase funding for research into the disease and possible cures; and, finally, to provide scholarships for students entering the medical field in the hope of creating doctors, nurses, and researchers who would help fight cancer and other diseases–and for students entering science education to carry on Jane’s work in the classroom.

…I have never been one to put all my eggs in one basket…

To date, we have paid out $16,000 in scholarships and directly raised or directly generated nearly $200,000 for research and awareness. Some of that money has helped seed ground that raised substantially more than that–or so I’ve been told. We’ve done two social media marathons on carcinoid and NET cancer, appeared twice on Doctor Radio’s cancer program, created several PSAs, and done everything we could to change the carcinoid/NETs environment.

The dark side

Frankly, from my perspective, it hasn’t been enough. We haven’t reached enough people or raised enough money–or created an environment in which other groups have been able to raise enough money or reach enough people. Our board disagreed with me somewhat on that issue yesterday. I live too closely to things to see just how far we have come as a community or how much has changed.

So we set up Walking with Jane… 

I see the ongoing ignorance of the mainstream medical community. I see the ongoing lack of funding for research–how hard every NET cancer program has to work to find the research dollars they each need to make a difference. I see our ongoing failure to reach the general public in a meaningful way.

The bright side

But there are rays of hope. Today, we spend four times as much on NET cancer research as we did in 2010 when Jane died. There are 50 papers on carcinoid/NETs at this year’s ASCO conference. We’ve had two new drugs receive FDA approval and have a significant number of potential new treatments in the pipeline, including immunotherapy. PRRT is undergoing trials in the US and is increasingly widely available within the strictures of the trial process.

…it hasn’t been enough.

I won’t pretend Walking with Jane is responsible for any of that happening. Most of it was in the pipeline long before we knew what Jane had. I won’t pretend Walking with Jane will have much responsibility for what happens in the future. We are still too small to have a very large–or even significant–voice in what happens next in research and treatment. I do know we will continue with what we started: trying to make a difference in the lives of others with carcinoid/NETs–and I hope we will get better at that with each passing day.

Eyes on the prize

To do that, though, we need to keep our eyes on our original purposes. We are not trying to provide money for research into the more common forms of cancer. There are plenty of organizations doing that job. We aren’t trying to provide transportation or lodging for people who have to travel long distances–though God knows NET cancer patients have greater need of those kinds of support services than most.

But there are rays of hope.

Right now, the only possibility of curing carcinoid/NETs is early detection followed by prompt surgery. Early detection can only happen through broader awareness in both the medical and general populations about this form of cancer. And we need to continue searching for ways to detect the disease reliably–and early.

Grim realities

But most tumors will continue to remain undetected until they have spread. For those patients, we have no cure–only a handful of palliative treatments that can prolong life and decrease suffering in some patients. We need to continue supporting research into both palliative treatments and potential cures. We need to support the basic research into the disease from which those treatments will come.

…we need to continue searching for ways to detect the disease reliably–and early.

And we need to continue to support the education of future scientists, doctors and nurses–and the educators who will help create those researchers.

I wish we could do more than that–and we will continue to work to educate patients and their doctors about not only symptoms but also potential tests and treatments–but, as Walking with Jane’s board pointed out to me yesterday, most of the time I will still have to function as an army of one when it comes to this organization. Our focus needs to reflect that reality.

While I am often alone --often function as an army of one--I know I am not really alone in my passion to end NET cancer. My job is to bring people together so that, truly, no one fights alone. I have the luxury of time that few others have--and that means much of the organizing and writing that go into Walking with Jane falls on my shoulders.
While I am often alone –often function as an army of one–I know I am not really alone in my passion to end NET cancer. My job is to bring people together so that, truly, no one fights alone. I have the luxury of time that few others have–and that means much of the organizing and writing that go into Walking with Jane falls on my shoulders.

Filling out Form 990

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

An apology or two

I’ve had an insane week that has put me so far behind on a number of things I may never catch up.

First, my apologies: I have a piece in hand for liver radio-embolization. I’d promised the writer to get it back to him with my edits close to two weeks ago. I just haven’t gotten there. The piece is coming–just not as soon as I’d like.

…my bottom line. 

There is also a series on immunotherapy coming. I’ve, again, been too busy to write it and get it off to the doctor who has agreed to read it and make sure I don’t screw anything up. It is coming–just not quite yet. I want to be sure I get it right.

Life intervenes

Part of the problem is my father-in-law was admitted to the hospital again last weekend, one day before he was supposed to come home from rehab. He is doing better and is back in rehab as I write this, but it’s been a scary few days–and I’m not sure he is close to being out of the woods.

I want to be sure I get it right.

And then there’s the other fly in the ointment: I have been at work on our first long Form 990 EZ filing for Walking with Jane, Inc. For those of you not involved with running a foundation, we are required to file a form with the IRS every year in order to keep our tax exempt status. That is Form 990.

Living with the Form

That process, at the federal level, is insanely simple, until you raise more than $50,000 in a year. You file a postcard online that requires little more than your corporate ID number and a statement that you did not make more than $50,000. It takes about five minutes.

…it’s been a scary few days…

Unfortunately, the Commonwealth of Massachusetts requires you file one of the longer 990 forms if you go over $5,000, as well as a form of its own. That is significantly more complicated–and significantly more complicated than I anticipated. I now understand why our lawyer suggested we might want to think about an accountant.

Requirement makes sense

I understand why the Commonwealth requires the more complicated form. In fact, I wondered why the IRS didn’t require it as well. The detailed questions the form asks–and the records it requires one keep–make it pretty difficult for anyone short of a criminal genius to engage in fraud or embezzlement–at least I would think so.

That is significantly more complicated…

When time allows, I will post those completed forms on our About Us section of this website. I think it’s important that you see what kind of money comes through our door at this point–and where that money goes. It isn’t a huge amount–about $21,000 last year, if memory serves–actually passed through our hands.

Money vs. Money

That’s a very different number than the amount we generate each year. Most of the money we create for carcinoid/NETs research is given by donors directly to the Dana-Farber Cancer Institute, the American Cancer Society, the Caring for Carcinoid Foundation or the Carcinoid Cancer Foundation. Unless it is donated to our Jimmy Fund Walk, the Walking with Jane Fund at DFCI or to our Relay for Life team’s online site, I don’t even know that money exists unless the director of an organization says it happened. And they often don’t know it has.

It isn’t a huge amount…

 

I know it happens because I see on our stats page here that people clicked on a “giving” link to those organizations–but once you’ve gone to their site to make a donation, there is no paper trail here about what you gave them. And they have no idea that you arrived there from out site and made a particular donation–unless they have a better stats section than we do.

The point of the exercise

 

I can say with certainty that our Walking with Jane, Hank and Anne Jimmy Fund Walk team generated just under $67,000 for NET cancer research at DFCI in 2014, for example. I can also say, with certainty, that less than 20 percent of that money was ever held by Walking with Jane, Inc. I can also say with certainty that another $15,000 was donated  last year directly to the Walking with Jane Fund at DFCI that I set up in the year after Jane’s death–and that none of that money ever was a part of Walking with Jane, Inc., for all that I know Walking with Jane inspired that amount to be donated.

I know it happens…

And it doesn’t bother me. When I started on this journey my only interest was in finding a way to cure carcinoid/NETs. Part of that is about raising awareness: you really can’t cure something if you don’t know it exists. Part of that is about research–and you can’t do research without a steady flow of money. If people want to give that money to Walking with Jane because they don’t want to get on someone else’s mailing list, that’s fine with me. If they want to give that money to some other group engaged in fighting carcinoid/NETs because of something they read here or hear me say somewhere, that’s fine with me, too.

The ultimate goal

So long as we find a cure, so long as this disease goes into the dustbin of history with small pox and polio, so long as we find ways to let people take the walks Jane and I will never get to take,  I don’t care who gets the money or the credit. I just want this disease dead before it kills someone you love.

…that’s fine with me.

And that’s my bottom line.

For a neophyte, filling out the Federal Form 990 is an obstacle course under the best of circumstances. These have not been the best of circumstances.
For a neophyte, filling out the Federal Form 990 is an obstacle course under the best of circumstances. These have not been the best of circumstances.

 

 

My Patriots problem

Fundraising, Uncategorized

Be forewarned

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 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.

The Garden

Death, Grief, Jane, Uncategorized
My garden projects all feel like "ground under repair." My life seems the same way at times.
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.
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.