Julie can't eat cheese

Hi friends! I continue to have a lot of fatigue and we’ve been somewhat busy, so just haven’t had the energy to update the blog – I am long overdue!

Since my last update, I have seen my oncologist twice (on 5/31 and 6/21). My labs have been moving in the right direction, and while I am still very anemic, my red blood count has continued to slowly go up. My last 2 metabolic panels were normal! So exciting to not see the red exclamation points on My Chart. It’s the little things.. I have felt a little better about seeing folks outdoors (finally getting nice here in the PNW) so have been out with some friends and have also been doing more work things.

When I saw my oncologist on 5/31, I talked with her about my migraines. I have had an increased number since starting Taxol. 6 since April – which is high for me. I typically get 1-2 a year. I haven’t really felt more stress since April (although this is all mildly stressful) and asked if I needed anxiety meds to manage. She wanted to wait until I was done with chemo to see if it got better before starting a new medication. [I’ve never been on anxiety medication, although I would probably greatly benefit – I am a worrier!] She also asked if I had been meditating to manage stress/anxiety… no, my practice totally fell off. I was trying to do it in the morning but with chemo, I am so tired. It’s hard to get up early and get moving. She suggested doing it before bed… which I haven’t done yet either…

On 6/21 I talked with her about thrush (don’t have it – but thought I did), left side soreness (probably scar tissue), and neuropathy. Over the weekend before my appointment, my left pinky had started feeling tingly, like it was falling asleep (but the feeling never went away). I have been doing weekly acupuncture with Taxol (I had read it helps with neuropathy). I was avoiding my left arm (worries about lymphedema), but my oncologist said it was fine to get acupuncture on the left side. Since my right side and feet/toes are all fine – I believe the acupuncture is helping! I had acupuncture on 6/21 (including my left side) and the tingling has gotten better – although my finger still feels a little numb. My oncologist thought only 1 finger with neuropathy was great and said all my nails look great too (still using biotin nail polish and so far they still look normal).

I also asked my oncologist at what point are folks considered cancer free? They count surgery as your cancer free date – so for me, my second surgery date of 1/18/2023. They no longer say “in remission” or cancer free – the new language is NED for No Evidence of Disease.

I was feeling a little like my oncolgist wasn’t taking my concerns seriously – she was super positive and really happy with how I am doing through chemo and didn’t have any concerns about things I brought up. But then when I got to chemo on 6/21 and folks around me were talking to the nurses about their issues (hospitalizations, heart problems), I realized I probably am doing really well comparatively! My symptoms feel big or urgent to me, but overall – I am doing pretty well, all things considered.

My hair has continued to grow, but it continues to be very light/invisible. My eyebrows have recently decided to fall out and the microblading is fading. I bought an eyebrow pencil to fill in, then there was a lot more to fill in so I got an eyebrow stamp. The first time I did it – they were totally uneven (lol). I called to schedule my microblading touch up in July. I didn’t have enough time to do it before chemo started, but the place agreed to do it after I finished – can’t wait!

I also started an online art therapy group for folks with cancer. It is visual journaling – I have attended 2 groups so far and really enjoy it. It helped me put a visual to the anxiety in my brain (busy bees) and now when my bees are busy, I try to imagine them calming down on flowers.

Time feels like it is both moving incredibly fast and extremely slow… and somehow I have *only* 2 chemos left! A weird thing is happening though – while I am so excited to be done with chemo (goodbye fatigue! goodbye steroids! hello hair!), I am also starting to feel a little nervous to be done. There is comfort in the frequent appointments, being monitored, and seeing my team regularly. I have joked that I will probably have a massive breakdown in September, after I finish my treatments and have the time/space to reflect back on all that has happened to me and figure out how to live without constant fear of the cancer coming back. *Open to suggestions!*

I was hoping to have an appointment free July – but not to be. I see my radiation oncologist on 7/6 for a follow up and simulation and then see my oncologist the week after on 7/10. Then I think I will be free until radiation starts in August! We have a trip planned for late July and we cannot wait for that bit of summer/life normalcy.