A Busy Few Weeks

a whirlwind of activity

Photo by Towfiqu barbhuiya on Unsplash

First, I want to thank you all for the outpouring of love after my last video post. It was a hard one to film and share. I’ve always intended this blog to be as open and honest about my cancer journey and I want to keep that going until the end. There’s also the teacher/coach inside of me that hopes that some of what I’m sharing can help you better navigate this cancer world whether it affects you directly or someone else you love sometime down the road.

I’m not going to lie, things have been pretty challenging these past few weeks. That first week after my scans, where we learned of my advanced disease progression, was filled with random tears each day. Lots of revisiting the whole “why me?” question and really struggling to accept my new reality of an even shorter than expected lifespan.

Then there’s the subject of fear. I’m grateful that I’d put in some work before this to not necessarily fear death itself, but fear is still present. I fear that I’ll die a painful death. I fear that I’ll die a slow and painful death. I fear that I’ll be a burden to my husband and family as I’m dying. I fear that I won’t ever again have a day where I feel good. And of course, I have a huge fear of missing out. There’s still so much life that I want to live and see and now my time is on a countdown clock. The question of “will this be the last time?” plays on a loop in my head.

If all of this sounds a bit somber and sad, it is. There’s been a sad cloud over our house. Chris and I have shared lots of tears together and get so sad thinking of when we’ll have to say goodbye to each other. Our relationship of 24 years has had its ups and downs, but I promise you it’s never been stronger than it is today. I’m going to be so sad to say goodbye to my best friend. But, we’re not there yet.

I’ve/we’ve actually had a busy few weeks since my last post. This has included:

• Two zoom consults with potential death doulas and moving forward with hiring one of them.

• Starting my new chemo (Lonsurf) and having two infusions of Avastin.

• Attending a friend’s beautiful celebration of life service.

• Having a paracentesis, where they removed 1.6 liters of fluid from my abdomen.

• Celebrating Mother’s Day with my family and getting good hugs from my grandson.

• Having a consult at University of Cincinnati about a potential clinical trial–though I won’t be following up with that.

• Returning to some alternative therapies like Reflexology, Massage and Acupuncture.

• Visiting a local Green Burial site.

• Meeting with my Palliative Care Nurse for the first time.

• Attending my cousin’s college graduation party.

So as you can see we’ve been busy. It kind of feels like a whirlwind of activity when I list it all out, but there’s also been lots of downtime and resting. This new chemo has really kicked my butt and has left me extremely nauseated, fatigued and vomiting several times a day. I’ve lost weight because I hardly have an appetite. I’m technically on a two week break from the chemo, which I had hoped would ease these symptoms, but no luck so far.

This is affecting my quality of life so depending on what my lab tests say, particularly my CEA’s, I’m either going to move forward with a reduced dose of the chemo -or- stop it altogether. I don’t want to spend whatever time I have left running to make it to the bathroom or trash can in time.

I still have this cough and it seems like it’s just something that I’m going to have to deal with. It’s affected my lung capacity where I easily get out of breath doing the simplest things. This is a far cry from my old athletic self and it’s really hard to accept that sometimes. I’m thankful that I have some meds that I take at night to help me sleep and get some fairly good rest, but the cough is still such a pain during the day. Also, I can’t remember if I talked about it before but I had some pretty severe swelling in my feet and legs (pitting edema) but thankfully that’s gone down with the addition of another med. My feet/ankles still aren’t back to normal but they are much better now.

Ok, I think that’s enough of an update for now. I believe I mentioned that the month of May will be in Ohio and I have friends visiting both this weekend and next. Then in June, we’ll be doing some traveling. We’ve rented a cabin in Hocking Hills to spend time with our kids and grandson for a few days at the beginning of the month and then we’ll be heading out to NYC for a couple weeks after that. Part of it will be in Long Island at a friends house, part in the Catskills at another friends cabin and then finishing off in Brooklyn for a few days. I’ll give more details about that in the future (likely on Instagram) but there’s a tentative plan for a little informal gathering at our old gym on Sunday June 22nd. Stay tuned!

Thanks as always for being here and for your love and support. Despite all the downsides of this chemo, I promise that I’m still finding ways to laugh, to find joy and I still list out 3 things I’m grateful for each night. This isn’t easy by any stretch of the imagination, but I’m doing my best.

With love and gratitude,

Jess

People always ask how they can help which I really appreciate. The reality is that I don’t need any material things right now. But if you’d like to donate towards services not covered by insurance (like death doula, massage, acupuncture, reiki, travel, vegan pizza) one time donations through Venmo (@ladyfox) would be graciously accepted.