Difficulties are just things to overcome, after all. - Ernest Shackleton

I hope you all had a WONDERFUL holiday! I had 3 days treatment- free so we all got up to snowy Vermont for a quick celebration with friends and family. At this point, it seems the chemo leaves my system pretty quickly, so on the days off, my symptoms subsided and I was able to eat the foods I love and to be pretty active.

Rory is home this week! Rory, Steve, Laura and I got to ski at the Craftsbury Nordic Center yesterday. I'm paying for it a bit today, but for the few hours of whizzing through the scenic rolling terrain, it was worth it! Rory and I also had a lovely Christmas Eve sunset-snowshoe up on our friend Melissa's land, followed by delicious cheese fondue in Melissa and Lee's cozy log cabin. Delightful!

Now back to reality and day 4 of chemo and radiation. It is working well to go straight to treatment at Lowell General from work (I leave a bit early every day) and I plan to keep this schedule as long as I can. I am told in a week or so the effects of radiation will start to kick in so I am saving my sick time should I need it. But.....so far, so good!

A BIG huge thanks to everyone who has sent me inspiration, from hysterical video clips to rabbits bearing inspirational messages, to beautiful plants and flowers. It makes a huge difference to head into my treatments with the support of you all! XOX!

Hello Friends! I will be planning 2 meals/week for my family starting mid-January

Hello Everyone! 

If you are interested in bringing over a meal in January or February please send me an email at
 mslowe@paragon-c.com. I will schedule and coordinate gluten- free veggie meals for the family. 


Sage

New Tattoos

I made it through my multiple biopsy surgery last night with a few side effects from being under general anaesthesia in a reclined position for 3 hours. Those issues seem to be resolving today, and we are hoping that my very sore butt resolves in the next week! 

Assuming speedy healing, chemorad is planned to start Dec 20 or 21 so we've been busy meeting docs, getting educated, and even getting radiation tattoos for proper placement of the rad beams. Yikes. 

Now I just need to get mentally prepared for moving full steam ahead into treatment!  

Love you all! J 

“In the depth of winter, I finally learned that within me there lay an invincible summer.” ― Albert Camus

Hello Friends,

I am touched that many of you have told me you check this blog frequently - I am honored! I will be better about posting.

Sadly, we lost Steve's mother, Eileen, this past weekend. She died peacefully and pain-free and Steve and his sisters were nearby. She lived a long healthful life - almost to 92 years. Rest in peace sweet Eileen!

I head to a mini-surgery tomorrow where they will put me under for a few hours to take a number of biopsies to determine the extent of the Paget's for skin grafting surgery at the tail end of my APR surgery (probably in late March). I am hoping to be healed enough to make the ride down to NYC Saturday for Eileen's memorial.

It looks like I will start my daily chemo-rad treatments December 20th. I am told it takes a few weeks to get knocked down by them, so I am looking forward to enjoying a pain-free respite for the holiday.

So many of you have thoughtfully asked what you can do. I think that later in January, as radiation treatments progress, we may need some healthy meals and maybe even visits or errands if I can't work. Steve will post something here in advance when that time comes.

We do so appreciate all the kindness that has come our way - you all rock!  XOXO, Jane

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