From August 28, 2017

Discharged

Journal entry by Abigail Johnston — 

From ongoing care with my Orthopaedic surgeon. Great news is that the right femur bone where there was the 5 cm tumor is showing remodeling (meaning the bone is replacing the cancer). Weird to see the hardware inside my bones and the screws securing the rods but thankful that with the rods I can walk and am not worried about a fracture.

From August 24, 2017

Great news!!

Journal entry by Abigail Johnston — 

Now we know that tumor markers aren’t everything and aren’t precise … BUT …my blood work from yesterday came back and the changes are amazing!! One marker started at 75 and is now 2. Yes, 2, not a typo. That’s normal!!!!! The other one started at nearly 400 and is now 86. Not quite normal but we’ll take it. Doing a few happy dances tonight.

From August 21, 2017

What’s next …

Journal entry by Abigail Johnston — 

Saw the medical oncologist today and discussed the medication that they will use next to treat my cancer. Starting Ibrance and Letrozole now. Hope is that I will be able to reach NEAD which stands for no evidence of active disease. The odd thing about this phase of my journey is that there is more time between scans and it’s a big change from having dr appointments every day. The way that the dr explained these meds is that it takes time for them to build up in my system and even if there is a small progression of the cancer while they build up, that’s still ok. Hard to think in those terms but still learning how to set expectations.

Next steps …

Xgeva and Lupron shots this week

Scheduling a PET scan

Starting meds once pharmacy is worked out

Oophorectomy on 9/11

Working on building my stamina right now as I get tired so easily. PT is still twice a week. Going to be released from no lifting this week and will be focusing on staying active and working on conditioning.

Thank you to everyone who has continued to check in and continued to support my family while I’m still adjusting. We are so blessed.

From August 12, 2017

Second opinions

Journal entry by Abigail Johnston — 

We’ve toured Florida over the past few days with hundreds of pages of records and CDs with scans! First stop was Tampa and the Moffitt Cancer Center and then we ended up in Miami at the Baptist hospital Cancer Center, newly connected to Sloan Kettering in NY.

Good thing to come out of both appointments is that other than some minor tweaks both medical oncologists agreed with and supported the treatment I’ve been getting and my current doctor is planning to go to next. Both doctors were a bit shocked as to the presentation of my cancer and how it developed.

Only real downside was all the waiting around and the fact that there are no identified trials for me. Not that we have to be in a trial but we were hopeful that perhaps I could be involved with something newly developing. Again, silver lining is that one of the reasons that I don’t yet qualify is that I’ve not had a failure of any medication thus far.

So, we’re headed home to hug the boys and figure out next steps. I’m still recovering from whatever was going on in my face and jaw and the hospitalization over last weekend. Nearly done with antibiotics and steroids from that adventure.

Thank you all for your prayers and checking in on us. There are no truly easy days but we are adjusting and figuring out this new normal as best we can.

From August 8, 2017

Home again!!

Journal entry by Abigail Johnston — 

Was released to come home today. Pain free!!! No real idea why I was in so much pain but discovered that I do have a bone met near the left TMJ. Our assumption is that all the sinus pressure, inflammation and mucous put pressure on the exact right area. No doctor has confirmed this but no one has offered any other ideas either.

Bone scan results are in and it appears to show stable mets but no real indication of progress. Medical oncologist is pleased with this so am trying to adjust my expectations and remind myself that this is my new normal.

Results of the full genetic panel came in today and I am positive for the ATM gene. Increased risk for both breast and pancreatic cancer.

Consult with Moffit Center is tomorrow and then with Baptist Hospital on Friday. Hoping for some insight and help interpreting what we know and don’t know.

From August 6, 2017

Pain, scans and back to the hospital we go …

Journal entry by Abigail Johnston — 

As many of you know, I had my repeat bone scan on Friday to test the effectiveness of the chemo and radiation and to help determine next steps. It worked out well that I was already getting scanned because I developed excruciating jaw pain on Thursday. While I’m sometimes doubting the characterization of me having a high pain tolerance, the best way I can explain the pain is … my doula described back labor as like a ice pick down your spine (did about 4 hours of that thank you very much Malcolm) and that is best analogy that I can come up with … the jaw pain literally feels like an ice pick striking and then dragging along my jaw. So not fun. I’ve had a cold this week so was expecting my white blood cell count to be affected but was surprised to hear it was 1. Yikes! IV antibiotics every 8 hours, pain meds every two hours and hoping for results of the CT scan of my head from yesterday. Hoping to go home sooner rather than later but getting this pain figured out is the priority.

From August 2, 2017

GYN surgeon

Journal entry by Abigail Johnston — 

Scheduled surgery for September 11th. Genetic testing will break the tie between oophorectomy or hysterectomy. Surgeon leaning towards the former as part of the risk/benefit analysis. Ultrasound coming up on the 14th after we get the second opinions from Moffit and Baptist next week.

Hold your children tight tonight. Tomorrow is not promised to us and everything can change in an instant.