Holding Our Own

It’s been 1.5 weeks of full treatment and so far side effects are minimal. The biggest issue is exhaustion, but I’m confident that will improve. My nurse says I need to stay active in the short-term even if it is hard as that will help me in the long-term. Do you hear that mom?? I’m going to do all the things.

The best news is that my pain has improved. I don’t think I realized how much pain I was actually in. Maybe it is like boiling a frog…slowly increase the pain and she won’t notice?? I haven’t taken any prescription pain meds and yesterday I didn’t even take over the counter meds. Woot woot!

I have one spot on the upper right of my ribcage that hurts on my back and my hip still hurts, but nowhere near as much as it did. My lungs still bother me and I cough when I breath too deeply. I guess I can’t expect 100% improvement in a very short period of time. Maybe next week I can report improvement in those two areas.

My hair is awful. I should be grateful that I have hair in the front, back and sides, but the top is completely bald. If it wasn’t for that, you couldn’t look at me and know something is wrong. I am really looking forward to hair growth so I can stick my head in the sand. 

This is a plan for living a long time.

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 :)  

Glamping

For the third time, we joined a group of friends for a weekend of glamping... because you really can't call what we do camping.  As you can see...

Real beds, a full bathroom, partial kitchen and a TV.  I'll take it!

While these weekends are a lot of work and cause anxiety as we watch deteriorating weather forecasts, nothing is better than the joy these boys get from playing with their friends all day and hanging around the campfire at night. 

This particular campground had a large bounce pillow. The boys spent hours on it between Friday night and yesterday.  They're finally big enough that we don't have to watch them every second.  A group of 5 boys and 2 teenage girls can care for themselves.  Yay!

I especially enjoyed yesterday morning.  We took our time getting up and lazed around as a family while it rained outside. Then we were pleasantly surprised as our rainy weekend ended up being decent. Cold, but fairly dry. I can't complain a bit as we expected a miserable experience.

This is what Ty looks like when he's trying to run out of a picture. But, I think this is probably what he looked like most of the day.  Run, run, run.

Jump, jump, jump.

I had to walk away as they were playing a game where they pushed each other off the pillow.  I know it was all in good fun and typical of boys, but I'm not used to it.  So I left.  Nobody got hurt so all is good.

This campground also offers firetruck rides around the campground and luckily Ryan is still young enough to want a ride.  And, the bigger boys went along with it which meant the adults didn't have to ride!

Hi mom!

These four had a great time together.  Making good memories.

I was a little concerned about the fire play, but I think this is pretty typical as well.  They were writing with the burnt ends of the sticks and making smoke signals.

Fire, fire!

I couldn't handle it any longer when I saw the glowing ends of the sticks so into the fire the sticks went.  Mom is no fun.

The evenings around the campfire are my favorite. We had our first s'mores of the season Friday night and a rousing game of telephone last night.  8 adults and 7 kids makes for a good game.  Ryan especially loved it and his enthusiasm was infectious.  Who else could get "poop" to go around the whole circle?

Eating is another major glamping activity. My boys are spoiled with waffles in the morning, quesadillas at lunch and a pot luck dinner.

So now we're home and the laundry is going.  I think it is time to plan another outing!

Cub Scout Graduation

Some things are worth the effort and that was the case for the Blue and Gold Banquet held yesterday. Dan and I as well as the parents of the other graduating boys put hours into making this a special event.  I think we succeeded. 

The boys got a bit sick of my camera.  They should have expected it. This one played along...

This one was not amused.  But, doesn't he look handsome in his new boy scout pants and belt?

My three handsome guys.  Sigh.

Mom and Dad made the trek out.  Thank goodness!  We needed help. I guess you are never too old to need your parents.

I still don't know how they got so big.

Check out this bridge.  Dan refurbished the base, built the rails, cut the symbol and painted it three times.  This thing is solid and the boys all loved it.

One of the moms made these awesome cakes.  I'm putting the pictures here so I remember when it is Ryan's turn... so I can show it to the cake lady :)

Pics, pics, pics... I can't help myself.

Grandma and Grandpa C also made the trip out. Such a great day. I love this picture.

I think we had the largest group there.  We were surrounded by those who love and support us.  We really are blessed to have each one of these people in our lives.

Eight boys graduated to boy scouts yesterday.  Most of these boys have been together since they were Tigers.  I still can't believe it is all over.  Tiger, Wolf, Bear, Webelos I, Webelos II.  Where did the time go? Five years. Poof.

Here was their picture from their first Blue and Gold.  These six graduated together today along with two more boys who joined in year two.

And, while 7 of the 8 are moving on to the same Troop, it won't be the same.  These years were special and I'm sure the next years will also be special in their own way.  Just not the same.

Each boy earned their Arrow of Light and crossed over from cub scouts to boy scouts. Here is Tyler officially becoming a boy scout.  Thank goodness our friend is his new scoutmaster as well as Ryan's den leader in cub scouts.  We're still all connected so it really isn't "the end," right?  Just a curve in the road.

We will treasure this experience.

Tyler's cub master who was also their den leader made a special box for each boy.  The box lights up and it will have a special place in our home.

There were lots of treats yesterday from new neck slides from grandma and grandpa to a hydration backpack and mess kid from his great (and I mean GREAT) aunts and uncles.  He was strutting around this kitchen tonight with the backpack on saying he looked "sick."  When I told him that you don't look good when you are sick, he told me that it is boy talk and it means awesome.  Oh joy... we've reached that stage.

The greatest gift today was having everyone there.

Here are our new bears.

And then I made them put their wolf neckerchiefs back on for this pic.  They weren't pleased with me, but played along well enough.

Silly pic for their Blue and Gold.  In only three years.  Yikes!  We really did get lucky with a great group of kids with both of our boys.

I couldn't be prouder.