Julie can't eat cheese

I think when you get a life changing diagnosis, you come to expect the worst, but really, really hope for the best and so feel devastated when bad news comes. Maybe unconsciously, you only really prepared for the good news? I have never felt sick, so in many ways – all of this still seems super weird and continues to be a bit of an out of body experience.

Recovery has been going ok overall and luckily, I am still off work until 1/2. I started feeling better and napping less last week, but then I developed an awful rash under both armpits on 12/23. I think it was from wearing a compression bra constantly (I have 4 – so was rotating and washing them!) but it became impossible to wear. I was advised to take Benadryl, but couldn’t use any topical cream on the surgery side. So was just trying to ice it to stop the itching. But I was miserable – it was horribly itchy and then since I was taking Benadryl constantly, I was tired and spacey. And I also stunk – I couldn’t wash under/near the rashy area, as it was super inflamed. Luckily, P had a fun Christmas and has been having fun with my parents, so don’t think she has noticed my misery much.

I met with my surgeon on 12/27. This was a follow up to see how I was healing, review pathology, and get the drain out (YES!!). I kept my appt with my original surgeon, even though he didn’t do the surgery. He said he had talked with the other surgeon before my appt and they both felt good about the decision to do the lumpectomy. Good news: the surgeon got all of the tumor out and it was bigger than imaging had shown (5.85 cm). The margins overall looked good, one was slightly lower than they’d like. It was the posterior side, which is near the muscle/breast bone, so there is less tissue there. Bad news: cancer was found in all the sentinel lymph nodes. My surgeon was surprised by the amount of cancer in the lymph nodes, as my cancer is rated low in mitosis (I wasn’t sure what this meant and I think he said it referred to the rate of cellular division), so it was surprising it had spread so much. He said this will mean another surgery: a complete node dissection. They will remove all the level one lymph nodes on that side and he said it is a surgery that “just sucks.” They will have to cut nerves, so I will either lose all feeling in my upper arm or there will be nerve pain. Forever. There may also be range of motion issues and lifetime risk of lymphedema.

The complete node dissection surgery is also outpatient and I will have another drain (uuuugghhhh), which he said will be even more important. I’ll get referred to a lymphedema PT and be fitted for a compression sleeve. He said there is a slight chance the tumor board could review my case and decide to just do radiation, but he was pretty sure it will be surgery. The tumor board meets on Wednesdays at noon and is an interdisciplinary team that reviews cases and makes treatment recommendations. He said he would be in surgery so not on the call, but my other surgeon planned to be there so if they decided no surgery, one of them would call me.

Because of the cancer in the nodes, I will also be referred for a bone scan and CT scan (chest/abdomen/pelvis) to make sure the cancer hasn’t spread further. I got calls on 12/28 to schedule the CT and bone scan – they will both be on 1/4. For the bone scan, I will have an injection at 11:30, then have the scan at 2:30. The CT scan will be in between at 12:15. I have had a lot of different injections – 2 MRIs and dye for surgery – I probably glow in the dark.

I will also be referred to a medical oncologist now for ongoing treatment. The surgeon didn’t know much about chemo protocols/treatment, as it’s not his area of specialty, but potential more bad news: my surgeon believes I will need chemo due to spread and my age. You guys. I have a really weird head – like a massive dent in the back of my head. It wasn’t an injury or anything – my soft spot just never healed, but it is big. I will not be a pretty bald person! Please send me wig and hat/beanie links. Or if you have any I can borrow – I will take them!

I was able to get my drain out too! I asked my surgeon if it would hurt and he said “It won’t hurt me at all!” Jokester. I felt a little suction and he said “Are you ready?” but it was out already. I don’t actually have a lot of feeling near my incisions. [Having the drain out has improved life dramatically! I think it was adding to my rash/discomfort on that side.] My surgeon is happy with how I’m healing and thought it all looked good. I can use itch cream now on that side as well. In regards to the indentation I have and how radiation goes, he said I can be referred for reconstruction (they take muscle from the lats). I don’t really have strong thoughts about it right now, it doesn’t bother me and I don’t want more surgery, but radiation may change it more. So we’ll see.

With my drain gone, I now have to start daily stretches to increase range of motion and decrease stiffness. I also got the ok from my surgeon to get back on my Pelly! I can only do low resistance and have to keep my heart rate under 130, but major win. With the crazy weather here over the last week, I only got in 2 walks (I was not attempting in rainy or icy conditions!).

I am waiting on a call back for my surgery. They were looking between two different surgery centers and were having a hard time reaching one while I was at the appt on 12/27.

We still continued to bake a little over the last week: third time was the charm for the poppyseed roll! After another dough rising flop, we found a new recipe that worked great. We made the TJs chocolate chip cookies (vegan) and they came out ok – taste was good, but pretty thin and crumbly. I read somewhere to try chilling the dough before cooking – so will try that sometime. Last, Dan made amazing cinnamon rolls on Christmas. We are also eating other healthy foods – I swear it’s not all desserts/sweets.

I have so many thank you notes to write! Like a ridiculous amount and my list keeps growing. I also appreciate all the messages, so so incredibly much. It’s been a tough few weeks and I know there is more to come that will just suck and test me. I’ve been trying to think of a word for 2023 to hold when things are hard and dark. Ideas?