It's been a busy time. Lots of news!

First, I asked my oncologist to stop the Perjeta. The diarrhea was no longer manageable and my weight had dropped to 115 (and continues to be there). Stopping the Perjeta was helpful (down to just one immodium tablet per day!), but it does make me nervous that I'm not "doing all that I can" to prevent recurrence. I did get 14 infusions of it, which is more than many people receive (for example, patients in other countries do not have access to Perjeta, which does not yet have cheaper bio-similar medications, aka generics). I still have to watch what I eat and eat small amounts at a time.

I had an infusion yesterday. After another dip in my white and red blood cells last time (which were so low that I was close to being sent home), both are back up. In fact, everything is in normal range except the white blood cells (but they are close!), which is great news.

I don't know yet if it will be my last infusion (at this time) or if I'll have another in three weeks. I have an appointment to meet with my oncologist at that time for next steps and I assume she'll decide at that time. Regardless, I have made an appointment to have my port removed. I hate it; it sticks out and it's sore a lot. I have to wear a cushion over it when I wear a seatbelt on the passenger side. If I need another infusion, they can do an IV through my hand (my arm's veins are small and difficult to access).

Though infusions may be done for now, I still have 2-3 appointments each week for physical therapy and dry needling in hopes of loosening up my left shoulder. One issue is an "overactive pec" muscle and the dry needling (essentially, a much more intense version of acupuncture) is supposed to encourage that muscle to release. And I continue to try to address the radiation fibrosis in that area with massage and medication. 

No change in the amount of anger I'm holding with regard to the damage that the radiation caused, so I am working toward seeing a therapist in order to release the anger and try to be more hopeful and optimistic. One thought I've had is to try to find someone who's dealt with people who've experienced trauma with permanent disabilities in hopes that I can change my mindset and accept the chronic pain without dwelling on things in the past that I cannot change. That's something I've never managed well; it's always taken me a LONG time to move past things and not fantasize (constantly) about "what could have been."

As for side effects, I still have a lot and not entirely sure what's permanent and what's not. The radiation fibrosis and the "iron bra" are permanent but *may* improve. The brain fog? Not sure yet, but it is worse right after infusions, just like the joint stiffness and hot flashes. It makes me suspect that the herceptin may have a suppressive effect on estrogen. I'm a little worried about the temperature regulation going into summer. I have always loved hot weather, but I no longer sweat on my torso or neck (another side effect of radiation), so I overheat quickly. But I'm also cold! Aside from the diarrhea and dry eye problems (exacerbated from all the crying, too), I also have a weird type of tinnitus. I tried to find where I'd documented it before, but couldn't, so I'm not sure when it started. I think it started during or after radiation. It's not a high pitch like most cases; it's two lower tones that alternate in no pattern. I can hear it when it's quiet, so when I'm trying to think or sleep. It's not great! So I need to make an appointment with an otolaryngologist to see if there's something that can be done.

As for hair, it's growing slowly. It apparently looks like it's growing fast to other people, but it is definitely not fast. I finally colored it (all by myself--for the first time ever...except for the Sun-In in the 80s) about five weeks ago and I don't have any roots showing, so that's how I'm judging the growth. The color was a bit brown to me (instead of black), but was still pretty close to my natural color. It doesn't look right to me, but I suppose that's just me looking at it too closely.

I do have a couple of spots where I may have permanent hair loss right at my hairline. The two spots at the "corners" just above my temples is where it's thin and it's also where my hair first fell out, but once it grows out more, I'm hoping it won't be noticeable even to me. My other bald spot is...in an area that is never publicly displayed. If you are a person who grooms, you might think this is great, but it's grown back in the areas that still need shaving.  😒

Anyhoo, I've included a pic of the hair color before and after. I also had my eyebrows microbladed because they mostly dropped again (and my lashes, too), which made me look sick, particularly with the darker hair. Microblading is very weird and was hard to get used to and I'm still not 100% on it, but I don't look as sick without makeup as I did before, so that's a good thing. I just wish my brows and lashes would come back and stay!

I hope to have another update in a month or two with some real progress. Fingers crossed!