My Journey

I’m a slacker blog writer. Here is a quick update.

Radiation finished on Tuesday Nov 17th. All in all my skin did well, I’m still using lanolin & moisturizer on one section that is still pink/peeling a little until it fades back to normal.

I started my Tamoxifen (hormone therapy pill to block the estrogen feeding the cells) on Thursday 11/19 and so far I haven’t noticed any side effects. Since it’s seems equally likely to have side effects as not, I’m just trying to be aware of anything out of the ordinary. Most common side effects seem to be bone aches and heat flashes

I still have some neuropathy in my feet, which has been mostly fine while at the house as I am generally barefoot and sitting a lot. I’ve been wearing my flip flops to run errands. Still pretty uncomfortable to wear socks and close toed shoes at this point, although I have done when needed. I’m not sure if its one of those things that if I just suck it up for a couple of weeks and wear shoes, it’ll stop bothering or not. I haven’t tested it yet. I’m starting with wearing socks around the house and will see how that goes.

My hair has started growing. I think it’s about a quarter inch long all over and feels very baby fuzz like. BJ says the back is dark enough that it’s probably not all grey, though I can see some grey in the front…more waiting.

I realized I never sent out any updates after meeting with the radiology oncologist on the 13th, meeting was good. I have 4 weeks of radiation treatments (yay, it’s not 6!). There was an appointment to set up my position with a molded piece to hold my head & arms and get cat scans and then a dry run where they took images (x-rays, I think) to make sure all was good.

Actual radiation treatment started yesterday and went smoothly, just like the practice run.

So, daily treatment now through Nov 18th. I have weekly check ins with the nurse on Mondays and the doctor on Wednesdays for any questions or concerns.

Still dealing with some neuropathy in my feet from chemo, it sounds like it could take some time to clear up completely. My thin fuzzy hair is still the same just a little longer, it feels like I might be getting some new growth but I can’t actually see any yet. The radiology oncologist doctor did say it could take a couple of months …sigh… patience is not much fun. However, my nails have grown and I actually have long nails of my own for the first time in forever, so that’s exciting.

We met with the oncologist about last treatment (bloodwork all good so last chemo was approved) and next steps.

I have now got prescriptions to pick up for my hormone therapy (Tamoxifen) currently planned as a daily pill for 2-4 years on its own. I’ll start taking them 2-3 weeks from now once I’m past the main chemo side effects. My next oncologist appointment will be mid December and I have bloodwork labs to get taken a week or two before that for review on our appointment.

I will continue with Kanjinti IV appointments every 3 weeks from now until next June. This is an antibody treatment to fight the HER2/neu+ receptor and basically joins with the cells instead of the other one to prevent feeding and splitting cells, not unlike the Tamoxifen does in replacing the estrogen that is feeding cells.

My first appointment with the radiology oncologist is on Tues Oct 13th. I’ll find out then how long I will go in for radiation treatments. They will most likely start the following Monday Oct 19th and run Mon-Fri for 3.5 to 6 weeks. They schedule the daily appointments between 8am and about 3:30pm, so it’s going to take a 2-2.5 hour chunk of my work day to drive down the 40ish minutes, change, get my like 3-5min treatment, change back and then drive the 40ish min drive home. If I try to put it at the beginning of my day, the commute down could be closer to an hour as more traffic picks up as people start working more (or less if more lock downs happen between flu and COVID in Marin and SF), if I try to schedule at the end of the window around 3:30, I could get stuck (or not) in the traffic going north while going home. I can’t decide which is less annoying traffic-wise but somehow both seem like a better option than smack dab in the middle of the day every day for 6 weeks.

That’s about it. Chemo treatment officially done, ✔ ✔! Uncle Tom Ritz, you can let your hair grow out again!! I need to shave mine one more time in a couple of weeks so the thin fine pieces I have haloing my head noe grow out more evenly with the rest of my hair that should start growing again in 2-3 weeks from now. We’ll see what color and texture comes through in about 3 months, I think I heard about 1/4 of an inch a month average for hair growth, so by 3/4 inch, I should be able to tell the color and maybe whether it’s going to be straight or curly, but that may be too soon…I think BJ thinks it’ll be more in the Spring, like March or April….I hate waiting…its like not realizing you’re watching the spring season finale to a show, having a cliff hanger and then have to wait until Fall for the next episode!

All is well with my blood counts. Slightly anemic, which is expected. Had a slight bit of neuropathy in my feet with this last round so I’m being better about icing the whole time this round and they’ve given me info on some over the counter things to take to help that but if it gets worse with this round, she may eliminate chemo #6 because it may not be worth this side effect as it can be a long lasting issue. So, we’ll see how it goes.

Showing off my new hat. I forgot one when we left this morning so BJ let me borrow his bandana but when I mentioned it they said they get lots of donated hats so I got to pick a couple. This is one of them 🙂

All in all, things are moving right along. I’m mostly register with the radiology dept downstairs and will get an appt set up for mid October for my first initial appt to discuss treatment plan, which will likely start Oct 19th. I think I have 2 appts before treatment starts unless they combine them into 1. One to talk treatment and the other to get the settings recorded for the radiology treatment. My dentist told me to reach out if it seems like radiation is hitting on the high side so they can get me a mouth guard to protect my teeth. Ah the joys of medical treatments.

But just think, by Christmas I may have some hair back. BJ has generously claimed that the hair he can see growing in now is “ash blond” instead of the grey it actually is. 😁 My reply to that is “that means I can finally get some fun colors into my hair without having to bleach my hair!” Such a good silver lining to age and chemo!

I think that’s all for today.

Happy Labor Day Weekend!

Everything went smoothly today. However, I did discover that I will have 6 chemo treatments instead of the hoped for 4 treatments. Not that anything was found or any issues with anything, it’s just the treatment plan for the chemo that I’m getting. I am not clear on why she thought 4 may be all that was needed when we first met, this time while she was looking at my records, we sort of had a minute of her going “oh, I see why…no, I think we should stick to the 6.” So, I’m not sure what the original thought may have been but she’s had a change of thought…so now I have appointments scheduled for Sept 4th and Sept 25th.

We talked briefly about radiation but that will be finalized with the radiation oncologist once I’m done with chemo. She said it was usually treatment for either 3.5 or 6 weeks of 5 days/week for radiation and she said with my age it was likely they’d recommend the 6 weeks. But I’ll find out more about that later. Radiation usually starts about 3 weeks after the last chemo so I’m looking at probably Oct 19th – Nov 27th if I get the 6 weeks, so I’ll need to find out how we work around Thanksgiving or if they work through the holidays but it may put a damper on potential plans for that week.

So, that’s my update for this week. Finishing this post as we head down to San Diego for services with family for Grandma Kay on Sunday and Monday.

Today was my 3rd Chemo day. All going smoothly.

Started about 10:30 after my doctor’s appointment and results from my 8am bloodwork came back. Should be done by about 1:15pm.

So far I think I can say I’ve had a fairly uneventful cancer experience and I’m ok with that.

I’m trying to find out if my 4 chemos is going to be extended to 6, there seems to be a question in the paperwork. If so, it would extend me to the end of September instead of mid-August and kick radiation to starting mid to late October (not sure how soon it would start after chemo is done. I’m guessing about 3 weeks and a review of bloodwork), which then (depending on how many weeks of radiation I need), could eat into November, possibly Thanksgiving… we’ll see how everything falls out in the next month.

Update on Aug 1st as I just realized I never posted this! It’s been a busy week. Working through the week with naps and resting times. I’ve decided that Monday is not the best time for me to get chemo. It makes for a long week but I made it to Saturday and slept for like 14 hours last night. Now I’m contemplating what to have for breakfast.

Next chemo scheduled is Friday Aug 14th. Hopefully, the last one!

Yesterday went totally fine that I totally forgot to send an update.

I ended up icing my hands for most of the treatment based on the recommendation of one of the nurses so I got pretty bored. BJ couldn’t be in with me so after the first hour of icing, I started sneaking out my thumb so I could be on my phone to read and text/email.

I might have to shave my head today. I’ve been waiting for it to come and actually got a week more than I thought I’d have given how thin and fine my hair is. The change happened in like 30 minutes. I was just telling BJ how weird it was that I still had my hair and he ran his fingers through my hair and only like 1-2 strands came out, totally normal. 30 min later I’m in the shower and LOTS of strands coming out, now some comes out every time I touch my hair.

So, I think this afternoon well have a head shaving party!

I’m well prepared with lots of scarves and hats!

Monday seems to have been my worst day so far, Tuesday was quite a bit better and today is better still.

I do seem to get tired as the day moves on but so far it’s been pretty manageable getting through my work day.

I’ve got lots of new hats and pre-tied scarves now, cause really, any excuse to buy more scarves! I think I have about another week before I need to shave my head. Some one did tell me they didn’t lose their eyebrows until after the second chemo treatment, so that could be exciting.

Honestly, work has been so busy, I only have time to think about losing my hair as I’m falling asleep, so not a lot of time focused on it currently. Although when I do think about it, I think…I should have taken more selfies or appreciate my hair more while I have it…but I don’t love photos of me and to be fair, I did appreciate that it was clean hair today because I washed it last night when I could shower after taking the cover bandage off of my port.

I’ve also started biting my nails again…damn you COVID! After decades of fake nails to prevent the nail biting I’m back to jr high and high school habits. Which I never really lost, it just was easier to refrain when you don’t want to mess up pretty nails…which I now don’t have! It’s a sad day in the book of pretty nails history.

To sleep now and start another busy day tomorrow.