I had my drains removed on Friday 5/24, 11 days after surgery. Over the holiday weekend I had a seroma that formed after the drain was removed that caused a lot of pain. It felt like I had a golf ball in place of the new cavern of my arm pit that was pushing the scar open from the inside.

My surgeon said it was normal to have excess fluid build up after the drain was removed. If it didn't go away on it's own, he would drain it on during the next surgery.
After seeing the gnarly scar in my arm pit, I requested to have my previous plastic surgeon do the closure for the completion mastectomy. My surgeon said they don't usually have a plastic surgeon for this procedure and asked how important it was to me if it meant delaying surgery. He said he is pretty good at closure which I screamed in my head "have you seen my arm pit?" I don't care what it looks like to other people, but I have to look at this for the rest of my life so I want it to be as good as it can be. I was adamant to get my previous plastic surgeon involved. Luckily, my plastic surgeon and surgeon where able to find a date before their summer vacations so June 4th my foob comes off. (not a typo foob = fake boob)

We got a membership to our neighborhood pool. Kids will be able to come here on their own all summer. Summer equals recovery, chemo and radiation for me; pool, pool and more pool for the kids.

5/28/19

I posted this on Facebook: "First night without my private nurse/gardener/housekeepers/chai latte deliverer, Pat and Tim. Alayna has taken over nursing duties and helped me with my meds and drain. Hope to have pathology results next week."

I have received so many thoughtful and positive comments that I dearly appreciate. This poem in response really touched my heart:

Those firsts that you don’t want
Those firsts that will make you want
To get stronger
Wiser, kinder, more connected
More present
Than without those firsts
When in all of it
Its in the way
An obstacle
A Mount Everest
Greatful for all sherpas
Sharing the load
Sherpas knowing the wind
the path the goal
One step at a time
You’re getting there
Those firsts you don’t want
But they’re now a stronger you
A more present you
Together
Sherpas
Firsts
You
Love
-Jesper Enevold

5/20/19

My surgeon called today with the initial pathology report. The two tumors in my underarm that they thought were 1.6 and 0.9cm and 1cm apart were actually just one 3.2 cm tumor. They ended up removing 13 lymph nodes that all came back negative for cancer! Great news!! The cancer didn’t spread? What stage is it? Jury is still out.

Since they didn’t find cancer in the lymph nodes it looks like it didn’t spread out of my underarm. But both masses on my breast that didn’t “feel like cancer” are cancer. They are considered T4 “skin nodules” (which doesn’t mean stage 4). They can’t determine what stage I am until those are removed and sent off to pathology.

So, that means I need to have the implant removed as well as all of the skin that was near those masses (pretty much another mastectomy). There are a couple of other weird lumps that I’ve felt so it’s possible the cancer did spread around my implant and hopefully no further but we won’t know until they get in there and cut everything out.

I just don’t have the words, so again, I’m having a hard time talking about this until we know more. What I know is the tumor board meets tomorrow and they will discuss my case, and my surgeon will call me on Wednesday with more news. I see him on Friday to take the drain out, so I’m hoping this week will have some answers on next steps.

For now, I’m trying not to freak out, watching movies with the kids and getting cuddles from my furballs until I have more news with actual decisions to make. To be continued…

5/20/19

Last Thursday I found another lump. It felt like a BB, smooth and hard, lower than the first lump and more towards my underarm where the 2 cancerous tumors are. I called my doctor to see if I should come in and he said to remind him on Monday and he’d take a look at it. On Monday he decided that he would incise both masses so we could determine what they are. He kept saying they don’t feel like cancer; they’re more smooth and rounded compared to the tumors in my arm that are more jagged and rough feeling and definitely felt like cancer.

Despite the radioactive dye and a second dye he injected during surgery, he was unable to locate the sentinel node which they planned to remove to determine if the cancer had spread. He ended up doing a lymph node dissection and removed the tumors along with numerous lymph nodes that were all encased in a fat pouch in my underarm. The lumpectomy recovery would have been 2 weeks but adding the lymph node dissection bumps recover out to 3 to 6 weeks.

Holy shit that’s a big scar! I thought the incisions on my breast would be much smaller. Had I known the length, I would have insisted on my plastic surgeon from before patching me up. The underside of my arm is so numb and I’m having all sorts of pain from the severed nerves. I have to stretch my arm over my head several times a day to prevent the skin from adhering to the muscle since there is no more fat between the two. My right hand is colder and repetitive motions are out, so I’m tpying and texting one handed when I can and with lots of typos.

My Dad and Step-Mom were with me for surgery and have moved in so I have around the clock care which has been so great. My Mom just had double knee replacement surgery and can’t fly for 2 months so its been hard on both of us only being able to support each other remotely (although I know it’s been much harder on her, as having your kids suffer is the absolute worst). Scott left for Montreal for work last night, so my Mother-in-Law was able to fly out to help while he’s gone. I am so grateful for all of the support from family, friends and co-workers. I can’t thank everyone enough. More soon.

5/19/19

Last Thursday I had a Bone Scan and CT Scan. I had a small amount of radioactive tracer injected and several hours later they scanned my entire body. This bone scan is looking for possible cancer in areas where too much or too little of the tracer has been absorbed by the body. For the CT scan they inject a contrast dye that combines X-rays and a computer to create pictures of your organs, bones, and other tissues. I asked how long it takes to get results and the nurse said, they will send to the radiologist that day to review and they will send to my doctor.

I thought I might get a call with results Thursday night. Later that night I stepped on our digital scale and was shocked to see I had lost 10 lbs since I last weighed myself 10 days prior. That can’t be right. I tried two more times and got the same low number. I yelled at Scott and he came in and weighed himself and said, that seems right.

[voice in my head from old nurse] “Are you losing weight… do you have joint or bone pain?” well shit, now I do. I freaked out and started to expect that dreaded call, “is now a good time to talk”? On Friday, no doctor calls, but the preop surgery nurse calls to go over the checklist to make sure I’m cleared for surgery. I told her about the weight loss and that I was concerned over results as I hadn’t heard from doctor. She says well I don’t want to say it wrong, but you’ll need to talk to your doctor about the results. What?!? What the hell does that mean? We get through the list and circle back on a few issues, resulting in her saying she needs me to take another blood test, get an EKG and see my GP doctor in person to make sure I’m clear for surgery. Wait, delay surgery why? No real explanation other than I need to do these tasks first. This conversation happens 1 hour before I’m leaving to catch a plane to Seattle for the weekend. No calls from my doctor so I spend the weekend thinking the cancer has spread and I eat like a pig trying to get my weight back up so that isn’t an issue to delay surgery. I get home Sunday night and step on the scale and I’m back to my original weight. I yell at Scott. He comes in and weighs himself and then says, oh well I guess the calibration was just off last week. Christ almighty, why couldn’t you have mentioned that before I spent the weekend thinking I was dying?!?!

On Monday I emailed my doctor and breast care coordinator explaining I hadn’t lost weight and that shouldn’t be a concern to delay surgery. My doctor was booked so I couldn’t see him in person but I asked about the scans and he emailed that they looked fine. ?!?!

On Tuesday, I had a PT appointment to get a baseline on my shoulder mobility in case I get frozen shoulder again with the new surgery. I stopped by my surgeon's office to request insurance paperwork for my medical leave and ask if my surgeon was going to call about the scans. They bring me back to an exam room and my breast care coordinator comes in and apologizes for not returning my emails or phone calls. I explain my concerns from the preop nurse and she says well the bone scan was fine, but on the CT scan we found an ovarian cyst which could be totally normal, although there is something on my thyroid that they are recommending I have ultrasounds to determine more on both. Ugh. More unknowns.

So my new plan, chill the fuck out, until I have more news to freak out to. We'll do more testing after I recover from surgery on Monday.

5/15/19