Side Effects

I’ve been looking forward to this week and dreading it at the same time. At this point, all lines of treatment are active!!

I started with the injection on Friday. The infusion was Tuesday afternoon and both types of pills started Tuesday evening so it has been 48 hours.

I am exhausted, but I’ve also introduced a lot to my body in a short period of time. Hopefully I’ll adjust and perk up soon. Until then, the family is taking good care of me.  It is going to be weird grocery shopping alone again.

Last night I had a slight fever and started with chills. As soon as that started, I went to bed and I think I slept through it. I’m really good at avoiding unpleasant things. I woke up ok this morning and managed to take a couple of quick naps throughout the day so I’ve got enough energy to take Ryan to baseball tonight.

I’m still hurting, but I swear I hurt less. I’m not sure if that is possible so quick, but I’ll take it even if it is all in my head. I really want this first line of treatment to carry my for a long time so that I still have lots of options left to try.

Unfortunately my hair loss has continued and it isn’t pretty. It is a very large, distinct bald area on the top of my head towards the back. But, it’ll grow back and it is winter so wearing a hat isn’t strange unless you know me and know I can’t stand things on my head. At least I still have hair in the front so I can be on video calls.

So here we are. Plugging alone. Making it work. I may not have much to say after this. I hope. One more step towards boring.

It’s Only Hair

I was told that the hair on the top of my head would fall out from the 5 rounds of radiation and that process started yesterday. I’ve always had fine, thin and see through hair so this shouldn’t bother me. I didn’t think it would bother me this time. But, it does. There’s something about seeing hair on the towel and on your fingers that’s not fair. Then to see it on the hairbrush. Ugh!!

It is also weird because I know this will grow back and the chemo will ‘only’ make my hair thin so how do I prepare for this? What do I do when it is just a bald spot on the top of my head? A comb over? I’m really not a hat person especially with hair as I find them itchy.

I don’t know. Maybe I’ll just hide for a while. This is so minor and I know that. But it is real. And it makes me sad as it is a visible reminder. And yes, the top of my head is really sensitive right now. 

Ok, pity party over…back to work!

Skull Radiation

Last week, I experienced radiation on the top of my skull. Luckily it was just 5 sessions to stop activity until we can get the systemic solution moving. It was a very weird experience.

First they made a mask to ensure I was in the same position every time. Basically they warmed up plastic with a lot of holes in it and pressed it on my face until it cooled.  Then they used that mask to pin me down by my head for about 5 minutes for 5 days in a row while the machine rotated around me. I suppose the mask is better than medical tattoos on my face!

On the last day, they asked me if I wanted to take the mask home so I did, of course!! And, not surprisingly, I had one boy who needed to try it out. Freaky, right?

Here’s another angle. It reminds me of Hannibal Lecter.  Hmmm…maybe I have one more Halloween costume in me?

He has declared that I have a bigger nose! I think I’m offended.

Now I wait to see if the hair on the top of my head  is going to fall out. If it does, I’ve been assured that it will grow back. That is a small price to pay.

Here We Go Again!

It was a good 12-year run of healthy and I sure did enjoy all my minutes, but unfortunately the beast has found me again as I have been diagnosed with metastatic breast cancer.  I've decided to revive my blog as I'm struggling to keep everyone up to date on my road to NEAD (No Evidence of Active Disease).  

I'll remember my last "normal" weekend as Christmas 2022 which also happened to be the historic Buffalo Blizzard of 2022.  But, it was a really nice Christmas so I'll take that memory. 

Here's the deal...

• Late August: I started having hip pain that I blamed on sitting on the ground cross-legged in my late 40s.  
• Mid-September: When my hip still hurt a few weeks later, I called my GP who thought it was sciatica and I was sent to Physical Therapy.
• October: I was a good patient and went to PT weekly.  Unfortunately each week I felt worse and the pain was now also in my back.  
• November 2: I called my oncologist asking for a scan to put my mind at ease.  I was convinced it was arthritis.  
• Late November: A CT scan was approved and I called the same day for an appointment.
• December 22: CT Scan Day
• December 28: My oncologist called and advised that the CT scan shows probable stage 4 cancer activity in my bones, liver and lungs.  There is also a mass in my pelvis.  Freak out day!!
• December 29: Dan and I met with my oncologist who spent a ton of time with us and pulled strings to get appointment for the following week which was a challenge as they were backed up from all the cancelations due to the blizzard.  
• December 30: Met with my gynecologist for a biopsy (which came back clear)
• January 3: PET Scan
• January 5: Brain MRI and ultrasound.  Late in the day, my oncologist called to advise they found more lesions on the PET scan including something in my brain.  Freak out again!
• January 6: I met with a radiation oncologist about my brain.  He quickly put Dan and I at ease explaining that what he's seeing on my MRI is benign and had probably been there a long time so I do not have brain mets, but I do have it in my skull.  He also explained that assuming this is breast cancer, my stage will remain stage 2, but I will be considered metastatic.  So semantics, but metastatic sounds better to me than stage 4. 
• January 9: Liver biopsy and my 1st of 5 radiation sessions to my skull.  
• January 13: Last day of radiation to my skull and liver biopsy results came back showing the cancer is the same as my previous cancer. (ER/PR+, HER2-) I found this comforting.
• January 18 Today: Treatment Plan Day plus an EKG and x-rays of my hip and chest.  
• Zometa/Zoledronic Acid - Infusion every 3-4 months
• Zoladex - Injection once/month
• Letrozole - Daily pill
• Ribociclib or Palvociclib - Daily pills (21 days on/7days off)

This treatment plan will stay in place as long as it is working.  I'll have scans to check in 2 months.  This time treatment is a marathon.  

All in all... we're good.  I'm good.  I don't fully understand all of what is going on and quite frankly, I don't want to.  I do not intend to be an expert in all of this as that is what the doctors are for and I don't want it to take over my life.  It is a lot.  So I'll do what I have to do and ignore it when I can. 

I am more and more thankful for Dan every day.  He's the best partner anyone can have as he keeps me grounded, makes sure I am cared for plus he stops me from doing things I shouldn't be doing (but will try to get away with). After today, Dan and I are very hopeful that I'll be around for a long time overthinking everything and planning more adventures.  

The next week will bring an echo to establish a baseline for my heart, hopefully we'll get the results of the x-rays to see if there is anything leaning on nerves causing some of my pain, an MRI of my spine and we'll get my treatment plan started.  Giddy up.

I'm planning on feeling better in the next month so who wants to go hiking??  I'd really like to get to Erie County Forest while there is snow on the ground... if Dan will let me :)