Sarcoidosis or Stage 4

Whew, a lot has happened in a few weeks.

Mostly facts for this post.

I don't remember exactly where I was in this process for the last post so I'll start from the 'top'.

Annual doc appointment
Ultrasound
Biopsy
MRI - chest and where the biopsy came from.

oh shit!

Radiation doc
Surgeon appointment
CT scan
Bone scan
PET/CT scan
Oncology appointment

oh shit shit!

Surgery
Pulmonary doc
Hilar lymph node biopsy -ouch!

So, the first 'oh shit' was the first post. Cancer had come back.
Tests to check spreading, majority of these came back negative.
The CT scan wasn't so great, my lymph nodes in my chest were enlarged.
These results aren't looked at alone, a PET scan was suggested.

PET/CT scan was an interesting process - I was taken back to a room, injected with radioactive material, put into a room for an hour alone. Not supposed to move much when in here, I planned on working or posting on the blog, this wasn't an option, if I moved muscles too much the radiation would metabolize there and give a false positive, I took a nap. Then when ready for the procedure I asked to go to the bathroom. That was it's own room too with a radio active warning. The scan itself was just like others, lay down and go through the machine. Take a deep breath in and hold it for a few of the pictures, nothing big or strange in there. Afterwards I was allowed to change and leave, but do not get too close to others for 1-2 hours, made it 2 hours to be safe.


One last appointment before the 'oh shit shit'... Oncology again.
She showed me where my lymph nodes in my chest lit up - not a good sign, but maybe not bad either - this is mostly where we are now.

This can be sarcoidosis or stage 4 cancer.
If it was positive to be stage 4 cancer - surgery wouldn't have happened as it would all be treated differently.

I had surgery on Thursday August 20th then I went straight to the pulmonary doc's office. Surgery was also an interesting process. First I was prepped for surgery, then I was taken downstairs to the breast diagnostic center to get a Savi Scout implanted. This is a radio frequency device that is implanted via ultrasound to the exact location of the tumor. This allows the surgeon to get even more specific to where they cut out tissue, and the Savi Scout. This was implanted and then back up to the surgery center. I got to say hi to Brian and give him a kiss before heading back to my room. He wasn't allowed back, that made things a bit more emotional before heading back to surgery. Then surgery, easy process, woke up in very little pain, had more bruising from the Savi Scout placement than the surgery itself. Off to the next step, upstairs.

Brian and I wrote notes before the surgery since by the time I went to the pulmonary appointment I had only been awake for about 25 minutes. This doc is a bit strange, very relaxed and also doesn't seem worried about the scans. He said that he has seen this so much recently (past few years) that someone should research more and do a paper about the relation to chemo and sarcoidosis, then someone did a year ago. It's more common than anyone realized.

Sunday I got a COVID test - I guess this was required to go to PVH, although no one checked I had it done. Frustrating!
Next, virtual oncology appointment. Good results from surgery. No surprises from additional testing of the tumor. Margins were good. They looked around the lymphatic system some and didn't see anything out of the ordinary, no additional breast tissue either. This will go to oncotype dx testing ~2 weeks for results.

Yesterday I had the additional biopsies. This included anesthesia again, when I woke up I was speaking Spanish I'm told, and it was accurate and sounded good enough one nurse thought it was my first language! This makes me smile more than you know! Moving on, they went down my trachea and took 25 biopsies from 5 different locations. This procedure took more out of me than the last. I'm much more sore, a sore throat and tired on top of it. We went to bed at 7:30 last night,  I slept over 16 hours. The results of this procedure will come back tomorrow or Friday - this time around, this is the longest wait so far! My heart sinks a little every time the phone rings - don't call me right now. :)

Overall I'm recovering well, coughed up a little blood yesterday and today, but that was to be expected. My incision scar doesn't look like there will be much evidence left either, I did pull some steri strips off too soon and it opened a little, worse things can happen though.
I have a pillow fort setup in bed, poor Brian has to sleep next to it!
My home nurse is incredible - don't tell him I called him that. :)
All jokes aside Brian is helping a ton. He's made all my meals, helped me get anything I need. Ice packs always ready, even late at night. Coffee and breakfast in bed to boot.

Our kitchen smells wonderful from all the flowers! Thank you Taylor, Brittany/Scott, Mom, Mom again :) Mr & Mrs. Hernandez and Jax.

Pictures from scans to come for anyone interested - the bone scan looks interesting! I can no longer claim I'm big boned :D

Two Thousand, three hundred and nine.

2,309 days.

6 years, 3 months, 26 days.

1,649 weekdays and 660 weekend days.

I was finally to yearly checkups instead of every 3 months, then every 6. I made it, I made it to every 12 months.

I made it to 12 months - that's where I was supposed to stay.

In the past 5 days I've had 6 doctor appointments. In the 2 weeks prior I had 4 more.

This was a normal appointment, no nerves, nothing big to talk about besides telling her I'm getting married! This was supposed to be a great visit and end with a 'see you next year'.

I start the appointment with some simple items.

There is a spot in my chest that I suspect is the side of my implant, not worried.

There is a spot near my right shoulder that's sore, feels like sore muscle from working out, not worried.

Small bump near my arm pit, not worried.

Go through the whole exam, the doc is also not worried, but suggested we double check that's my implant. While doing the ultrasound why not check the bump near my arm pit, give me peace of mind since I worry.

Word of wisdom, when you get a test and the doc comes in before you change out of a gown to give results they are never good results. Good news is always a phone call, it's never the doctor either.

2,309 days.

This is the amount of time between original diagnosis and recurrent diagnosis.

Or is it 9 weeks?

9 weeks until Brian and I get married.

More to come, more tests to get done, final plan to be put in place.

I should probably find a wedding dress!