If you aren't in over your head, how do you know how tall you are? T.S. Eliot

Dear Friends and Family,

It has been a total whirlwind of doctors and second opinions this past week. Our heads are spinning! We sure wish more was known about these cancers and the path was clearer.

Today, my oncologist at Beth Israel (Schlechter) strongly recommended against following the SK recommendation of starting my treatments with 4 months of systemic chemo. He argues that because my specific adenocarcinoma has been known to be chemo resistant, 4 months is way too long to let the cancer possibly spread, should the systemic chemo treatments be ineffective. Schlechter is the first doctor we've met in the last month who seems very assured of something, so that won us over. And while I dread the idea of having to face 4 months of chemo after a major surgery, I dread more the thought of the alternative.  

SO... tomorrow morning I am heading to get 'set up' for radiation treatments, to start sometime in mid-December. My Lahey team has a radiologist who also practices at Lowell General, near my office. Since radiation is every day Mon-Friday for almost 6 weeks, I am hoping to do it on my way home from work every day, for as long as I can. I am told that the last few weeks I may have to take off work - the "butt burn" can be that severe. 

As the plan looks now, I would be done with radiation in early February, be given about 5 weeks to heal from the "butt burn", then in March have a massive (8 hour) Abdominal Perineal Resection (APR) to get rid of my entire lower digestive system (whaaaaaaah!) and also to remove the skin area with Paget's cells. Once healed from surgery (a week in hospital, then about two months healing at home) I will likely be looking at 4 months of systemic infusion chemo to try to attack any errant cancer cells that might still be floating around out there. 

Yes, I know it sounds pretty horrible, but I am told that it is the best and only real chance I have because "this cancer don't mess around". So, I am pumping up my resolve, putting my ducks in order, transferring my legal clients to other lawyers, learning to meditate, making calming playlists, preparing my staff and co-workers, cleaning up my act, filling out medical leave forms, applying for a medical marijuana card, finding cancer peers, and looking for a good caregiver support group for my partner and my rock, Steve!

So my dear friends, THANK YOU for your offers of help! We will need it once this treatment whirlwind gets going! We SO appreciate all the support you have given us already - the kind cards and posts on this blog, funny karate pictures of me, care packages, food, meditation tapes, rides, good advice and good humor, and walks for Tony! 

We love you all! J & S

Moving Forward - NYC

11/22/16

Today we are at Sloan Kettering in NYC for an "second" opinion.   I hope our questions will be more precise and helpful in determining a course of action.  It is amazing how dumb one can feel when emotions are high.  I can barely read a scientific paper, draft thoughtful questions, or even have a sustained conversation.  I think that we are both spinning.  We struggle to listen to different doctors present their part of care and integrate the whole thing.  This is clearly a tough cancer and extremely rare. I hope that today and tomorrow go well - Steve

11/23/16

We had a productive trip to Sloan Kettering this Tues- Wednes with oncologists who had some experience with Jane's rare cancers. The SK oncologists have pretty much conferred with the team at Lahey, but they recommend that we start, rather than end, with 4-5 months of chemo. Their logic is that more people tolerate the grueling full-year regimen of treatments and surgery when done this way. Also, starting with full chemo may be the best way to minimize any cancer cells that may have strayed from the original tumor site and set up residence in distant parts of the body. Distant metastasis is the true enemy to avoid here!

This upcoming week we will hopefully get the Lahey team to agree to the wisdom of this approach and start putting a plan into action.

We head back to Massachusetts Thanksgiving morning, and look forward to giving thanks for being together with Sage, Rory and good friends on the holiday.

Wishing you all a happy and healthy Thanksgiving!

Jane and Steve

Tentative Plan Forming?

The picture seems to be getting a bit clearer for me. We met with the lead Lahey C/R surgeon today. He laid out a plan to attack both cancers. It would start with chemorad for 5.5 weeks, recovery from that for about 4 weeks, then surgery to remove the lower colon/rectum and graft new skin, then 6-8 weeks to recover and another 4 months of chemo infusions. In total, about A YEAR to fight this cancer! Lahey thinks that such an aggressive approach, combined with my (relative) youth and health should result in a hopeful outcome. I did ask about a "no-treatment" option and the answer was not pretty. It's going to take me a while to wrap my head around this and build up strength for a huge fight, but I will get there!


I had a colonoscopy today that showed no additional cancer in the colon (whew!) and we got an appointment to meet with an expert at Sloan Kettering (NYC) on Tuesday. It will be great to get more doctors with experience with my cancers help us work through this confusing maze.


THANK YOU for checking in, and for all your support! My friends and family are truly awesome! With the help of you all, I will get through this!  xox, Jane

Still in a bit of shock

Dear Friends and Family, 

Last night we received the results of the biopsies the surgeon took Tuesday and are still in a bit of shock. Tests confirmed an aggressive adenocarcinoma in the anal canal with an associated Extramammary Paget's Disease of the area. Very rare and not well understood cancers. 

At this point doctors are recommending a full course of chemo and radiation, followed by surgical removal of the entire lower colon, etc. Before any treatment starts, there are a few more tests that would need to be done to rule out spread to/from elsewhere. 

Jane wants to consult with doctors at Sloan Kettering who have some experience with these cancers. She also wants to process the pros and cons of an intensive chemo radiation treatment for a hi-recurrence disease (Paget's) followed by a somewhat disabling surgery, versus the less painful (but more uncertain) palliative care only option. 

Whatever path we decide upon, we really appreciate you all being there for us. Thank you for your love during this difficult time. ♥️

Heading into a long holiday weeked we are still awaiting biopsy results and trying to stay busy and distracted. Jane returned to work - 2 meetings up in Vt Wednes and Thurs, and comiserating with her colleagues about the likely effects of  the new political order (whaaaaaah!) on environmental programs. 

Jane's case will be presented to the Lahey Tumor Board this upcoming Tuesday, so we hope to have more news mid-next week. Then she is likely headed to Sloan Kettering as soon as she can get an appointment with specialists to help get their opinion on the best course of action. 

Thank you for checking in. We really appreciate your thoughts and encouragement! Love, J & S

Thanks to all who signed up for a post-surgery visit with Jane! Due to the shift in plans we would like to postpone visits until after we have a plan of treatment. If heavy chemo and radiation are in Jane's future - she will definitely need visits and help from friends, so more on this later.

We read and appreciate the comments that you are writing on the blog posts.  Please continue to keep them coming as you have thoughts to share.

Thanks so much everyone!

So, dear friends, things did not proceed as planned today. The doctor went in to remove one tumor, but found several others throughout the area. They were all biopsied. Because this represents a whole different picture than anticipated, the original detected tumor was not removed. We are kind of back to square one, a different square one. This is a very rare cancer is all we know. Our surgeon mentioned a consult at Sloan Kettering, but that will await biopsy results and more pondering by the Lahey team. We are sorry to be so unclear, but this story should unfold as we get more information.

Thank you for checking in and for all your support. 

Happy Election Day All,

Running out to vote now and staying busy/distracted until we head into surgery later today. I hope to be out of the recovery room in time to hear about our FIRST FEMALE PRESIDENT!

We got a call regarding the official MRI read last night. The said the tumor looks too close to an important muscle to completely excise it. So once I have healed they would recommend about 6 weeks of chemo and radiation on those "sensitive areas" to try to eradicate any remaining adenocarcimoma cells. I'm beginning to think the surgery today might be the easy part of this battle. Thank goodness I have such a web of support in you all! Thank you everyone for your love and support, it means the world to me! XOXO to you all!

Jane’s post-surgery visits 10AM noon 2PM 4PM 7:30PM Thursday, Nov 10th XXXX CAROLINE JSL Friday, November 11th CHUCK Sabine BRAD Saturday, November 12th XXXX AMY M.  XXXX Sunday, November 13 XXXX TARA SUSAN C. XXXX Jane would love to see you! Visits will probably be more fun if spread out. If you want to visit, please post a comment below and we will do our best to keep this updated. Some of you have asked about bringing food. While this is certainly not necessary, if you are interested you could email Sage about what we might need: mslowe@paragon-c.com. Also, if you are having trouble posting a comment for a visit time, please let Sage know when you would like to visit.

Jane’s post-surgery visits 10AM noon 2PM 4PM 7:30PM Thursday, Nov 10th XXXX CAROLINE JSL Friday, November 11th CHUCK BRAD Saturday, November 12th XXXX AMY M. (2 pm) XXXX Sunday, November 13 XXXX TARA SUSAN C. XXXX Jane would love to see you! Visits will probably be more fun if spread out. If you want to visit, please post a comment below and we will do our best to keep this updated. Some of you have asked about bringing food. While this is certainly not necessary, if you are interested you could email Sage about what we might need: mslowe@paragon-c.com. Also, if you are having trouble posting a comment for a visit time, please let Sage know when you would like to visit.

Preliminary MRI read - small tumor!

Today was a busy day for Superjane.  We started with a pre-op visit to Lahey to consent to potential Tuesday surgery.  Next, trip into Beth Israel in Boston for pelvic MRI. Scheduled for noon, but did not start till closer to 1 pm, and Jane could not eat or drink after 8 am this morning. The MRI required Jane to be injected with glucagon. If you ever have to get this please be cautious, Jane had a bad nausea reaction to it (after the MRI, fortunately).

Queasily left BIDMC at 3:15 and raced back to Lahey for more pre op workup. While we were getting the low down from the pre op nurse at Lahey the wonderful doctor from BI called and said that his preliminary read of the MRI indicates that the tumor is small (size of a pea) and probably not too perilously close to delicate areas. It does not appear so complicated that it can't be handled at Lahey, and since we have a Tuesday surgery date there, looks like that is the current plan. Unless the "official" read of MRI says differently, Jane will be headed to surgery around 3 on Tuesday. She was planning on going to work Tuesday AM for meeting with her staff, but since she discovered the intensive surgery prep (yuck - TMI!), she has decided to take the whole day off.  

So we have tentative good news today. The official read of the MRI should come in a few days but we expect plans for Tuesday surgery will not change. After surgery they will determine the stage of the cancer, and what follow up procedures are needed.

Will post again on Tuesday if not before. Jane says she would welcome visits next week after surgery (but no pressure) as she will be off work for the remainder of the week.

BTW, a few folks have said they had difficulty posting on this. It appears the only way to do so is via the comments field. Please let me know if you have any problems posting to comments.

Thanks for checking in!  xox, Steve

Second opinion at Beth Israel - MRI on Friday the 4th

Journal entry by Jane Ceraso — 15 hours ago

We visited an oncologist at Beth Israel today to get a second opinion. I am glad we did. He recommended we do an MRI to get a better sense of the size/location/stage of tumor, so that is scheduled for Friday. I am thinking of switching to BI rather than Lahey as they offer the option of robotic surgery (imagine that!) if the tumor is located in a tough area to get at w/o damage to surrounding "delicate" parts. If MRI shows complicated tumor or spread into other places, we will probably switch to BI and start with a round of radiation to make the tumor more operable. If MRI shows simple, non-invasive tumor (please, please, please) we will likely have the surgery done at Lahey (Burlington) Tuesday (8th). I will have to think of an election day joke if they are prepping me on November 8th - can anyone think of any good ones? 
Anyway, it seems, with unusual cancers such as mine, medicine has a fair element of "art" to it, not all science. Real crash course this week in cancers, doctors, hospitals, treatments, and anatomy!  
Thank you for checking in dear friends and family, and thank you for your kind calls, visits, and messages. Love you all! 

How not to say the wrong thing

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How not to say the wrong thing

(Thank you Marion Ceraso for this article)

It works in all kinds of crises -- medical, legal, even existential. It's the 'Ring Theory' of kvetching. The first rule is comfort in, dump out.

April 07, 2013|Susan Silk and Barry Goldman

When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan's colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn't feel like having visitors, and she said so. Her colleague's response? "This isn't just about you."

"It's not?" Susan wondered. "My breast cancer is not about me? It's about you?"

The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie's husband, Pat. "I wasn't prepared for this," she told him. "I don't know if I can handle it."

This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan's colleague's remark was wrong.

Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator.

Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.

Everyone else can say those things too, but only to people in larger rings.

When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.

Comfort IN, dump OUT.

There was nothing wrong with Katie's friend saying she was not prepared for how horrible Katie looked, or even that she didn't think she could handle it. The mistake was that she said those things to Pat. She dumped IN.

Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.

Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.

Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.

And don't worry. You'll get your turn in the center ring. You can count on that.

Susan Silk is a clinical psychologist. Barry Goldman is an arbitrator and mediator and the author of "The Science of Settlement: Ideas for Negotiators."