First Week of Chemo and Cold Capping!

Hello dear friends!  I officially started my chemo treatment this past Wednesday 8/3/16 at the Wexford Health and Wellness Pavilion.

I had my support team to help me at home with the children including my awesome husband and a wonderful babysitter.  They held down the fort with children's doctors visits and swim team practises and so much more!  My wonderful mother and sister in law joined me for my treatment and took care of my cold capping regimen.  The job is labor intensive but they were amazing!

We arrived at 8am with our two large coolers in tow.  Sadly for the staff there was nothing exciting in the coolers for them!  They thought we brought the party!  Ha!  Well actually they were a bit excited because most of them had not ever experienced a patient who cold capped.  So that was fun!  I was supposed to start cold capping 45 minutes prior to chemo during what they call premeds.  I really didn't have much in the way of premeds so at about 25 minutes in my infusions were beginning.  Looking back now I am a little concerned that I may have botched the whole cold capping thing since I didn't get my full 45 minutes prior to treatment. On day 21 "ish" I will begin to get a feel for if my hair will stay or not.  That is usually the timeline of the big shed.  With cold capping you may still shed but not in huge clumps.  I have to mentally prepare myself for this to go in either direction.  Yes I would like to keep my hair so that life can feel somewhat normal, but lets face it, normal is a far way off right now.

 Here below are a few pictures that document the cold capping process.

Prepping the Caps with Dry Ice

Each Cap gets filled with its own bag of ice

They need to cool overnight so that they are -30 degrees

Checking the temperature before putting it on

Frosty 

I'm pulling on the scarf so that I can move my jaw

Speaking to my Oncologist

Wearing it home. We have to change it every 20 minutes. 

Day 1 down!

The doctors say that during treatment everyone has a bad day.  That day usually hits somewhere between day 3 and 5 after getting your infusion.  I felt like it was one big waiting game.  Each day I would wake up and assess how I felt. I was looking for signs of nausea or diarrhea.  The drug Perjeta that I am on is known to cause diarrhea.  Day 2, I felt pretty normal.  I did notice my lips felt a little dry which is also a side effect of one of my other drugs, Herceptin. I gargled Biotene mouthwash and made warm water with salt and baking soda rinses to help ward off any sores that may come to invade my mouth.  Day 3, I started to notice a little bit of what they call, Chemo brain fog.  I had a difficult time putting my thoughts together and completing tasks in my usual way. I was taking Claritin at this point to ward off joint pain from a Nuelasta white blood count booster, and think maybe that may have contributed to my feeling like my head was floating.

Wearing my Nuelasta Booster that injects about 24 hrs later
and can cause joint pain but is boosting my white blood count.
The injection felt like the flick of a rubber band.  Not painful.

 Day 4 was about the same with the addition of my taste buds beginning to change.  The tip of my tongue has a weird sensation as if I had burnt it on a cup of hot coffee.  I also noticed that sour foods are extra sour!  Day 5, I woke up with the feeling that this may be the day.  My stomach started to dance! I got nervous and immediately took an Imodium as well as an anti nausea pill.  The dance slowed down, as did my energy.  I could barely get out of bed.  After the fact I read that the nausea pill can make you very drowsy.  I decided at this point I needed to wean off of drowsy drugs because those seemed to be my major issue rather than the chemo itself. Day 6, no Claritin, no anti-nausea, one Imodium and I feel like I'm coming back to myself.  I still have the weird tongue sensation and dry lips, I have a headache that isn't persistent but is there.  I still feel like I could sleep a lot more, but I also feel like I could push through.  I did begin to notice that life as we knew it was starting to fade.  My poor husband doesn't really know what to expect.  I have to explain to him how I am feeling and what I am experiencing.  I know it is painful for him as well.  He said to me yesterday, "I just have to get used to the new normal." Maybe the off days will be far and few between.  We have no clue.  These next few months will be hard. But I am certain that if we keep our eyes fixed on getting through, loving and supporting one another and allowing God to work through us, that we will overcome this!

End of day 5: excursion to the zoo. Such a good
distraction and got me moving! 

On the bright side I did get a positive report after having my Pet Scan done.  After my MRI, my surgeon told me that they believed my lymph nodes were involved, possible inner mammary node involvement, as well as possible skin involvement.  I met with my radiology oncologist and he ruled out skin involvement.  The Pet Scan did not show lymph involvement although thats not to say I don't have any but that it is not large enough to show up on the Pet Scan.  Sooo my terrifying stage of 3c got downgraded to a 2a! Now that is good news!  Praise God!

I am forever grateful to all of you who have provided meals for us, donated financially, helped us with our children, cleaned our home, sent cards, dropped off flowers or gifts, sent books, given me hugs while seeing me out and about and so much more!  I just need you to know that I do not take that for granted at all! THANK YOU!!!!

I love how my friends and family have been showing their support in the cold capping process too!

Many blessings to you!

Love,
Amanda