Updates and Helping Hands

I want to let you all -- those who are thinking of and supporting Jane -- know that I will use the blog to update you with her successful surgery and recovery. Please feel free to contact me (stephen.lowe@paragon-c.com or 978.263.9725) if you need, but I hope to use this blog as my main form of communication.

To coordinate visits with Jane and meals for our family, I have set up an account with Lotsa Helping Hands, and some time soon, I'll be posting the needs we've identified. If you would like to get announcements and participate (e.g., see times for visiting or when much-appreciated meals would be useful), please register at https://my.lotsahelpinghands.com/community/jane-c.

Thank you.

Steve

Supporting Jane / Next Steps

Hi everyone,

Debra (Jane’s friend) here in Acton.  

Our lovely and loving Jane is readying herself for the next big step in her treatment.

Next Tuesday (April 4) she’ll be having a significant surgery, and I know we all want her to know how incredibly held and buoyed and rooted for she will be!

So here’s the task: beginning at 7am and continuing through the afternoon, will each of you send "good vibes” (as Jane calls them) to her? 

Perhaps other phrases speak to you: holding her in the light; surrounding her with love; keeping her in prayer; lifting her up to gods/God/higher powers. Or Sending Good Vibes! Whatever your flavor, please deluge Jane all day on Tuesday. Let’s be so amazing that she can’t help but know this, and feel this, from all of us. Thank you. 💜

With gratitude,

Debra Simes

Belly Blues

Jane's belly on 3/27/17 - Planned stoma site.

Lots of appointments today! First meeting with Dr. Francone (colorectal surgeon), then with Ostomy nurse, then 2 pre-op appointments/blood tests, then meeting with anaesthesiologist. UGH. Reality is setting in about this major event next Tuesday that will permanently change my body and life. I had Steve take a picture of my belly after they marked it for the ostomy site. It will never look the same again. My digestive system will never work the same again. After next Tuesday, I will have an "appliance" forever attached to my body. Still in a bit of disbelief that this is all happening to me. 

A day in the Portuguese sun

Today was a sun, scenery and delicious memory-filled day hiking on Rota Vicentino. It felt so wonderful to hike the beautiful cliffside trail high above the deep blue waves, feel the cool winds off the Atlantic, and explore the gorgeous beaches and little fishing villages with my loves! This day was totally magical. It will provide me with images and memories to last throughout my upcoming months of recovery. 

Xox, jane

Like mama said, our Portugal trip has entered a new dimension of coolness these past few days on the ocean. Away from the beautiful but busy Lisbon streets we have been able to spend more time with each other, get plenty of steps counted on our fitness apps, and enjoy beautiful seafood in even more beautiful scenery. All three of us have felt like this is one of the more incredible regions we have ever been to. Empty of people - tourists or locals, the Rota skirts steep cliffs and offers incredible views of the rugged coastline and the big blue Atlantic. I am glad to be spending time with mom and dad in this incredible place. -Rory

In Portugal, in the Alentejo, Spring is here! Everywhere there are flowers, from bushes, herbs, and trees. I love the many different kinds of plants. Oh, and then there's the ocean and the wind. Our first glimpse of the wide blue coast took my breath away! Large rolling waves crashed into the rocky shore way down below with winds blowing at 30-40 miles an hour.  This is a beautiful place to create memories of travel with loved ones, food, the pristine environment, and the joy of life!  - besos, steve

Tears

I had my pre-op meeting with the plastic surgeon who will 'close me up' at the end of APR surgery next month. I was shocked to hear that he plans to remove my pelvic floor muscles and take my gracilis muscles (from both inner thighs) to replace them. Up until this point no one has mentioned removing/moving muscles, so I am in shock. There will be a long scar down the inside of each thigh, in addition to the other (less visible) scars that I was anticipating. In addition he painted a picture of a much longer recovery and enumerated scary complications that had not been explained to me before. I don't know why I am getting different stories from my different doctors. I did check out the things the plastic surgeon told me with my cancer support group, and they confirmed the lengthy recovery and myriad of possible complications.

The plastic surgeon said to plan on three months off work to recover. I already told work I would take 6 weeks off, which is what my colo-rectal surgeon had told me. Im scared! Will I be able to return to a healthy, productive, and active life? This surgery is a much bigger deal than I anticipted! Trying to take it all in but the tears keep coming this evening. I WANT MY NORMAL LIFE BACK!!!

Finally - Surgery Date (April 4)

Hello Friends -

Here is my promised happy post! 24 days out of chemo-radiation today and I was able to dress for work without padding myself with burn cream and bandages. I am starting to feel pretty normal again and able to move about much more comfortably. Horray! This past weekend Steve and I celebrated our birthday by venturing out on a cross-country ski at Windblown. I was able to ski 5 miles and it felt wonderful! Also, my intestines seem to be recovering and I am thrilled to be able to eat fruits and vegetables again.

This Friday I will have a re-biopsy of the new lump found in the area of my Paget's disease. The first biopsy (done by a NP) may not have been sufficiently deep to adequately rule out Paget's so an experienced doctor will do this one. We are keeping our fingers and toes crossed that it is NOT Paget's and we can proceed with the treatment plans as is.

Speaking of treatment plans - my surgery date has been set for April 4. We are busy talking with doctors, plastic surgeons (for skin grafts), ostomy nurses, and a few folks who have been through this surgery before and can help us plan for post-surgery, setting up the house, and recovery. I am also working to get myself mentally prepared for both the surgery and aftermath. Although I am mourning the upcoming loss of important functional body parts - I know that this surgery is the path to getting rid of these nasty cancers and long-term survival!

I am told that I will be in the hospital for 7-10 days post surgery, then will have 6 weeks of medical leave where I will be somewhat confined while I adjust to my "internal remodel" and life as a "bag lady". Steve will be setting up a post-surgery visit schedule via this blog and I will welcome your smiling faces to help cheer me up!

Thank you everyone for the continued support. I really couldn't do this without you all!

 

Phase I Complete !

Hello beloved friends and family,

Well today I am 5 days post-treatment (phase I: chemo-rad complete!) and am taking my first full sick day due to painful blisters, of all things. As predicted, the worst effects of the radiation have shown up the week after treatments. The good news is I am done with this phase and should start healing soon!

Assuming all goes as planned, we probably won't be posting much the next month or so as I heal and prepare for surgery. Looks like surgery will be in early April and I will recover for at least a week in the hospital, then my surgeon wants me to plan to be off work for 6 weeks. We will plan to keep people updated on surgery dates and progress via this blog as many of you have said that you find it useful.

EVERYONE - I am SO thankful to you for helping us through the past 4 loooooonnnng months! The support everyone gave us, including encouraging notes, messages, calls, delicious meals, Tony walks, foot massages, lotions, music, flowers, treats - it was just so incredibly uplifting and really helped power me along! One thing about getting very sick is it really helps you feel the love! The love for LIFE, living, and the people around you. That means YOU ALL!

And I am so thankful for the wonderful STEVE, who has been the best cancer-caregiver a girl could possibly wish for!

Thanks for checking in folks and for everything! You should see a happy post in a week or so about my speedy healing!