The Negative Space

10/06/2025

Surgery tomorrow (Monday) plus a third cancer.

10/03/2025

Results are in and the spot by Sean's newly removed back tooth that was biopsied on Monday is another cancer. (This is in addition to the already confirmed spot.)

There is concern that there are cancer cells under/in the tooth so they plan to (brace yourself for a hideous sentence) shave the jaw bone where the tooth was to check.

The waiting for the original surgery date of next Thursday was feeling impossible, so we advocated for an earlier date and just found that it will be this Monday with a 530am arrival time. They plan to keep him overnight to ensure that he gets good fluids and pain management. We've done all we can this week to optimize him by getting him two rounds of IV fluids and a dose of IVIG, which boosted his immune numbers. But all those appointments come with a cost and he is exhausted in every way.

Thanks to this community, we got a grocery order today using DoorDash cards and we have a fridge full of food and a counter full of baked goods. Thank you.

10/03/2025

Listen in tomorrow, Saturday, October 4 as our Executive Director, Allison Breininger will be the guest on Living Healthy & Aging Well radio show with Ken Haglind. The broadcast will be LIVE from 12-1 pm CT and you can call in or text your questions to 612.999.3426.

10/03/2025

Agenda is live! Caregivers, we've worked hard to put together a day for YOU! Join us.

www.caregivercon.com

10/01/2025

We ❤️ Rodolfo! Former caregiver, opera singer, and actor we are thrilled to welcome him back as our Emcee for CaregiverCON.

Register TODAY to attend in person or via Livestream on 11.1.25.

www.caregivercon.com

09/30/2025

We've stopped asking, "What's the worst that could happen?" because time and again reality produces something beyond our imagination.

Yesterday, at the Oral Surgery appointment, three of the spots we'd seen on Friday at the conference were not concerning enough to biopsy. 🎉🎉🎉

However, one area near Sean's back tooth still looked red and his doc was concerned that there may be cancer hiding in and around it, so the decision was made to remove the whole tooth and then to perform biopsies on the exposed area.

Tooth extraction was not on our BINGO card, but here we are. So now we wait for more biopsy results. If they are positive, they'll be removed during the upcoming surgery, which is scheduled for 10/9.

Sean spent today at the infusion center getting IV fluids and IVIG (immune booster) in hopes of optimizing his health for the upcoming procedure. Tomorrow is our one day this week without appointments. Thursday is pre-op. Friday more fluids.

We are honestly in a daze. Moving through the moments in a blur of exhaustion and disbelief. One moment at a time. Looking for bits of joy like a quarter left under his pillow by the tooth fairy 😁 and a new bloom in the garden.

Many of you have asked how you can help. Texts, emails, cards of support are huge in keeping our spirits lifted. Doordash gift cards help with meals and groceries (allison@thenegativespace.life) Venmo helps with other costs and the occasional treat (-breininger). Thank you for your love, prayers, and support. ❤️

09/29/2025

09/25/2025

♥️ Primary caregiver for fiancé - now husband - Dil, who has an Acute Myeloid Leukemia diagnosis
♥️ Caregiver for 3 years, since June 2022
♥️ Our seventeenth caregiver feature in our Share the Mic initiative

"Dil & I were set up by mutual friends in November 2019, a few months later everything got turned upside down. I lost my father to dementia in July 2020 in the midst of the pandemic, then Dil was diagnosed with Acute Myeloid Leukemia in June 2022 at 31 years old.

I knew I wanted to marry Dil a few months into dating. Caregiving for him became my main focus during his 3-month hospital stay for chemo then another 3-month hospital stint post-bone marrow transplant. We often joke that we did all the challenging parts of life before getting married. I was incredibly lucky that New Jersey has such a comprehensive Family Leave Act and Dil’s job was so supportive and patient. Cancer is hard at any age but we are almost always the youngest people in the waiting room by at least 30 years. With Dil’s compromised immune system, we have had to be so vigilant for years now which has inevitably led to some degree of isolation and missing out.

Slowly, our lives are moving more towards regularity. Our gratitude that he made it through such a terrible illness and is able to rebuild his strength is with us every day. Last year, I celebrated my 40th birthday, we got married, and bought a house. Such life events seemed impossible to imagine even the year before. I am cautiously optimistic about what the future will bring."

Join us in thanking Suesan for sharing her story!!!

09/24/2025

At Sean's ENT appointment last week, his doctor biopsied a spot in his mouth that came back positive for cancer. Once again, they are recommending surgery to remove the area.

I have asked for a Care Conference to bring together his ENT, Nephrology, and Palliative Care providers to make a plan for what, if anything, can be done before, during, and after this surgery to avoid what has happened the last three times, especially considering that he's going into it just barely recovered from all that happened this summer + last week's Mohs. Surgery will likely be the week of 10/6.

We are devastated. Exhausted at a soul-deep level. Sad.

Because Fanconi anemia is a DNA-repair syndrome, it's possible that this cancer, which is in the exact spot of one of the ones he had removed in June, was caused by the previous surgery. Meaning that his cells, which are not good at repairing themselves, may have turned cancerous as they worked to repair from the last surgery. What an awful awful loop we're in.

We ask for your continued love and support as we continue trudging forward.

09/24/2025

Join us for a free virtual support group on Wednesday, October 1, from 6 - 7:15 p.m. CT. Our conversation that evening will be based on the topic of Episode 117 of the In Sickness podcast: How Caregiving Changes as We Age and Gain Experience. Listening to the episode is not a prerequisite for attending. This group is free and open to caregivers of all kinds.

We hope to see you there!

Listen: www.insickness.care
Register for support group: https://thenegativespace.charityproud.org/EventRegistration/Index/24873

09/23/2025

New Episode!

Episode 117: How Caregiving Changes as We Age and Gain Experience

Justin and Allison have each been caregiving for more than a decade. In this episode, they talk about how things have changed for them as they’ve gotten older, learned things about themselves and the health care system, and had countless experiences, both positive and negative.

Listen in, share, and join us for a free virtual support group on this topic on Wednesday, October 1 from 6-715pm CT.

Listen: www.insickness.care
Register for the support group: https://thenegativespace.charityproud.org/EventRegistration/Index/24873

Caregivers: How have age and experience impacted your caregiving role?