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!

World Cancer Day

Congratulation on finishing this phase of your treatment Mom. You are strong and healthy and you can do this. I love you so much. 

Six Days to Go

Jane is on day 24 of the 30 day treatment plan for chemo/radiation.  If all goes well (no snow days or other unexpected issues) the last day is Thursday, February 2.

As predicted, as Jane approaches the end of treatment she is very uncomfortable with radiation burn and her intestines are impacted by exposure to radiation (enteritis). With new dietary restrictions, due to enteritis, we have been getting more creative with simple soups.  Tonight we will enjoy a friend's homemade chicken soup with matzo balls and tomorrow I am taking a crack at making wonton soup with another friend's homemade beef broth.  

Up until now Jane has been reporting to duty at work daily. Because she is getting very uncomfortable, she has decided to work from as much as possible until treatment ends.  We expect that the severity of the symptoms will continue for one to two weeks after treatment ends.

While feeling under the weather, Jane is cheered up by your encouraging texts and posts on the blog.

Thank you all for your love and support of Jane.

Steve

A Dark Day in History

The darkness of this month of radiation and chemo is further darkened by the fact that today, we get a racist, classist, misogynistic, anti-environmental president. Although I can't make it to the Women's March - tonight after my radiation treatment I look forward to standing with many people of color here in Lowell in resistance to Trump's racist and mysogynistic policies. The nausea that I usually feel after treatments should fit the mood - it makes me sick to my stomach that Trump will be our president - responsible for the fate of our planet, our future generations, our healthcare, immigrants, and people of color.

Here's to our resistance! Here's to us all rising, like a phoenix from the ashes, from this dark day in history!

Sorry - I need to rant!!!

Every now and then the sentiments of how unfair this all is well up in me and I need to scream "This is NOT F#**#ing FAIR! I have lived my life to be as helpful to others and the world as I can be. I invested well over 3 years of my life becoming a lawyer so I could help others out of their environmental and immigration problems and no sooner do I get started than this cancer hits me. With all the time and energy this cancer is taking from me, today I had to give up the last of my law clients. I simply can't manage what I was managing before. This makes me terribly sad.

This weekend the effects of 3 weeks of pelvic radiation hit me like a truck. My intestines have been suddenly reduced to those of a three-month-old. My normal diet of fresh fruits and vegetables is out the window as I struggle to find ways to keep my nutrient and protein levels up without everything passing straight through me.

And, even more upsetting to me is what I am learning about the long-term effects of pelvic radiation. Besides many gory details which I won't go into, I am told that for the rest of my life the bones in my pelvis will be weakened and I have 3x greater chance of breaking a hip or pelvic bone if I fall during biking, skiing, running, hiking, etc...... all things I have loved all my life.

NOT F**ing FAIR!!!

RANT OVER.

Day 16...

Well, I made it to day 16,  so that means I'm halfway through my chemo rad treatments. Everyone tells me the second half of these treatments is much worse than the first half, so I'm planning on laying pretty low until early February and concentrating on making it through to the finish line. This (first phase) finish line anyway.

So far, my oncologists are pretty pleased with my progress. I'm still able to drag my burned ass out of bed in the morning and make it to work, and my cell counts even came up a bit this week!