Wednesday, April 24, 2019

Chemo Starting and Experimenting with Cold Cap Therapy #PenguinColdCaps

Chemo Starting - YIKES!

I received my Caps from Penguin Cold Caps way ahead of schedule.Thankfully, I found enough brave friends and family to take on this task which is no easy feat! This is no guarantee to keep my hair, but I need to give this a try!

I scheduled a trial run last week so that everyone is a little familiar with the process and to take a lot of the stress away from this job. It seemed daunting at first trying to gather our thoughts and plan of action.
Soon enough, this amazing group of women got it all together, and we learned enough to take away some of the jitters. Here is a pic of most of my team - There are a couple of girls missing from this picture.


WE had a plan of action - Anita was well-prepared for the capping by watching videos galore, and it seemed the natural choice for Anita to be my capper. She agreed to take on all 4 chemo sessions as my capper. I'm VERY LUCKY!

This is my capper Anita and myself on the actual chemo day.


Well, the dreaded first day of chemo was yesterday! I had 80 lbs of dry ice delivered to my house the night before. First thing, my sister Linda arrived, and we packed the cooler according to the instructions.

We were bringing the Igloo cooler and a suitcase full of items needed for capping. I will post a separate blog listing all of the needed items.

We arrived early at the Cancer Center. The nurse didn't look very happy when she saw me walking in with a suitcase and a cooler. Maybe a chemo nurse should just be a little more pleasant -
Just Sayin...!

My sister-in-law Kelli arrived to the Cancer Center along with my longtime friend Peggy. Sharon also came to help in the afternoon.

The first step when arriving is to meet with the chemo nurse and oncologist.  The chemo nurse was her 'pleasant' self. Doctor Szarka was very nice and happy.

The pre-meds consisting of benadryl, steroids and nausea medication began at 9:30. At that time, Anita put the first cap on my head. Wow! It was a shocker since our trial run did not get the cap cooled to the -35 degrees celcius.

At about 5 minutes, the pain became very intense in my head, and I started to feel very nauseous. I will say that it was very painful. I ate a few ginger snap cookies, and luckily the instructions were correct, that the pain started to get manageable. After 15 minutes, I felt a lot better.

It only happened with the very first cap. Remember, we are changing caps every 25 minutes so a *new* -35 celcius cap is going on your head every 25 minutes.

The chemo drip took about 1 1/2 hours, so we then packed up our belongings to continue the capping process at my house. The caps had to stay on my head for 4 hours after chemo stopped.

Round 1 of Capping Complete! Thanks to Anita, Linda, Kelli, Peggy and Sharon for a job well done!!!

I woke up today feeling a little dizzy, so I've been just resting until this passes.

Day 16 after Chemo Update

Well, it is now Day 16 after chemo, and I've been feeling great since about Day 8. The first 7 days were a wild ride. It started out with dizziness and headaches, followed by extreme fatigue, bad toothache, daily fever, major body aches, then the straw that broke the camel's back was back muscle spasms on Day 6.

I had my first meltdown on Day 6 when the back spasms pushed me over the edge. I couldn't get relief until I took extra-strength tylenol, Alleve, CBD oil and finally had to take a Xanax to calm my body down. I passed out cold and woke up the next morning with no more back pain! Hallelujah!!!!!

I started feeling normal on Day 8 and have been great ever since. The toothache caused some drama since I had to make an emergency dental visit to check the tooth, followed up by a root canal expert.
I took an antibiotic to calm the tooth down, since dental work is not advised for chemo patients.

The root canal doctor explained that this tooth already has issues, and my immune system always kept it at bay; but once I took the hit to my immune system from Chemo, the infection in the tooth started raging. It still doesn't feel perfect - If it acts up again, I will have to get it pulled since root canal spews all sorts of bad bacteria into your body which I may not be able to fight off.

Chemo #2 is on Tuesday, and I'm not looking forward to it, since you are down for the count for a week straight. Alot of the side effects come from a shot called Neulasta which they give you to maintain good white blood cell counts to help fight off infection. The side effect of this shot seems to be fever and body aches like the flu.

The hair shedding typically starts around Day 19, so God knows how much hair will fall out.
I'm hoping that the cold capping therapy helps, but who knows?!!?

Just in case, I'm visiting a wig store on Friday to line something up in case of cold capping failure.

One Down - 3 to GO!!!!

CHEMO #2  May 14- Down for the Count

My Cold Capping Team for Chemo #2: Debbie, Peggy and Anita





Well, what can I say! I thought that Chemo #1 was miserable until I met up with Chemo #2.

I walked in happily that Tuesday morning with my team. Once again, the dreary, miserable nurse greets us at the door in her monotone voice and emotionless face...(can you tell that I am not fond of this woman?!) hah - Shouldn't a chemo nurse have a happy disposition?!?! Just saying...

Pre-meds began at 9:30 which consist of all sorts of drugs: benadryl, steroids, ativan, pepcid, etc...
Anita started with my first cold cap minutes later. The first 15 minutes of cold capping is brutal - you sort of go into a tailspin and get very nauseous suddenly. The only way that you get through it is knowing that it will pass in 10 - 15 minutes. I nibbled on ginger cookies to halt the nausea.

About 45 minutes later, the first chemo drug Taxotere is administered through my port which is painful when inserting the thick needle. This takes about an hour, then the Cytoxan drug begins for another 30 minutes.

Around 12:30, we packed our bags and headed back to my house, since cold capping must continue until 5 PM.

I felt okay that night, but when I woke up the next morning, I noticed that my face was puffy unlike the first chemo. I started feeling dizzy and tried to talk myself out of it. By 2 PM, I decided to take a nausea drug Compazine, since this is the drug that was prescribed for the first 2 days at home.

By 3 PM, I started persistent vomiting. I never threw up like this in my entire life. I couldn't catch a break. I called my sister Linda, and she hurried over. She called the oncologist telling her of my symptoms. She said if it didn't stop that I would have to get to the hospital for fluids. It kept going and I also started having tremors. My sister Diane then came over, and we decided that I had to get to a hospital. I could only walk with the help of my sisters and C.J.. My sister called the ambulance. Linda came with me in the ambulance with Diane following behind. They immediately started me on another nausea drug and an IV.

The ride to Paoli Hospital seemed like forever since I was still gagging and shaking. The emergency doctor said that my sodium was dangerously low, and I needed to be admitted. I was jumping off the table with non-stop tremors. My eyes were almost swollen shut. The doctors started giving me steroids, since it appeared that I was having an allergic reaction.

It took almost until 2 AM to calm down the tremors and nausea. My sisters left around 3:30 AM. Thank God for my sisters!

The steroids and this nightmare experience were making me very emotional. I started crying non-stop around 6 AM - my oncologist came in at 7:30 saying that she was so sorry that I went through that. She said that she thought that I was having a reaction to Compazine because of the persistent vomiting, tremors, and swelling.

She tried to re-assure me that she would be making changes in the pre-meds to make sure that this doesn't happen again. Oddly enough, I received the exact same pre-meds during chemo #1. I also took Compazine 2 times when I was home the first time which makes me not completely buy this reaction to Compazine. How do I know that it was not the Chemo drug!?

Then, ONCE AGAIN, my tooth pain started raging, and it took almost 2 days to get the pain down with antibiotics. The oncologist said that you need to get the tooth pulled right away, since the chemo is aggravating this tooth when my immune system takes a hit.

I went into the hospital around 6 PM Wednesday and didn't leave until Friday 6:30 PM. I continued to feel horrible for another 5-6 days. I didn't feel normal until about Day 9 - 10.

I set up the tooth extraction appointment, and the oncologist decided to delay chemo #3 by a week to let the tooth heal. This week is a bonus week - so so happy that I didn't have chemo yesterday again. Next Chemo is June 12th. I'm scared to death of the next one. I met with the oncologist last week to discuss what changes that she is planning to make so that this does NOT HAPPEN AGAIN.

While I was at the appointment, I requested another nurse to finish out the last 2 chemo treatments!

The last time that I wrote I thought about continuing my moral of the story but was at a loss for words since I couldn't think of anything positive to say.

The moral of this chemo's story, and I hate to be so negative in my blog, is that CHEMO SUCKS any way you look at it!

Here is a picture of myself on about Day 11 from Chemo #2. My face swelling went down eventually, and I looked alive by Day 11. The Cold Capping appears to be working, but I don't really know if this will continue. Keeping my fingers Crossed!



CHEMO #3 - June 12 - I'm ALIVE and WELL this time...compared to the first 2 times!

Everything is relative!

On the day of Chemo, the oncologist surprisingly commented on my hair that cold capping seemed to be working for me. Prior to chemo, she was very negative about the cold capping therapy.

Once I am finished this long haul, I will be advocating for all of the women and kids(I guess I should include men too!) to be using these systems. Why should anyone need to be reduced to bald ESPECIALLY when they are feeling unbelievably sick and scared at the same time?!

I knew from the minute that I woke up the day after Chemo that things may be different and for the better.

The oncologist changed up my nausea and steroid meds in an effort to avoid the horrors from the 2nd time.

For the first 2 days after chemo, I felt pretty good - I knew that I couldn't eat certain foods, but that is to be expected. I wasn't feeling as nauseous as the first 2 times, but I was extremely tired. The Neulasta drug is injected into your body on the day after chemo late in the day. The side effects from Neulasta reared their ugly head again with the bone and body aches.

I basically laid in bed for 3 days BUT I'll Take this ANY. DAY. OF. THE. WEEK!  I can deal with being tired and achy all over - what I can't deal with is the horrors from Chemo 2.

Today, on day 6, I am still feeling achy, low back pain and weak. Again, I'll Take IT! I never even thought of writing in my blog until 2 weeks after Chemo, but this time I'm writing on Day 6. Wow - that says it all.

I see the light now. The end is near. July 3 is my last chemo if all goes according to plan.

I'm hoping that I'm NOT going out 'with a BANG', since it will be the Fourth of July and my Fourth treatment.

Oh, by the way, my nurse was awesome this time!!!  She won't be able to be there the next time, so I better not get Nurse Ratched.

This was my CHEMO 3 Cold Capping Team:

These are 2 former bosses who are now my great friends:


The moral of this week's story is that when even when you think that you can't go on or face another thing, somehow you muster up the strength and move forward. The terrible memories are replaced with better ones.  


CHEMO #4 - July 3rd - Saved the Best for Last!


Chemo #4 was my easiest chemo to date, and it just happened to be the FINAL ONE! YAY!!!!

I couldn't get to this final chemo soon enough to get this behind me. Thankfully, I was greeted by the other nurse , and my team went back to set it all up.

Dr. Szarka decided to give me an IV of fluids immediately after chemo, since the cancer center was closed on the 4th. We packed up our supplies, and then it was time for me to ring the bell signifying the end of chemo. I couldn't get out of there soon enough....I rang the bell hard, smiled at everyone in the room and scurried out of the office. I could feel this wave of excitement running through my body and wanted to scream.

When I woke up the next morning, I actually felt the best ever the morning after. My taste buds weren't even that compromised as these normally are. The chemo side effects were minimal , but the big bad Neulasta side effects stormed in on Friday morning lasting through Monday.

Have you ever seen the Neulasta commercials on TV - It shows a woman strolling through a park without a care in the world - I kept saying to my friends and family that I'd love to make my own Neulasta commercial. Picture this: I was hobbling through my kitchen, struggling up each step to my bedroom, curled up in bed most of the days and achy all over my body! HAH!

This was my Chemo #4 Capping Team: Karen, Anita and Suzanne

It's over! I want to thank all of my supporters throughout this ordeal. I cannot tell you how lucky I am to have the support that I did from friends and family. I've reconnected with some old friends who have gone out of their way to cheer me on through this. I was surprised almost every day by someone with cards, flowers, gifts, daily texts and phone calls - It never stopped. I'm so so lucky, because honestly, I think this how I made it through the especially hard times when I heard that it was aggressive and a high oncotype score and then the word of chemo. Someone was always there cheering me on and telling me how proud that they were of me - I never had a minute to sit back and worry about anything because people were there for me constantly.

I still have a minor surgery ahead of me in the later part of the year. My port removal is at the end of this month. And Yes - work- I have go head back at the beginning of September. UGH!

Special thanks to my capping teams! My friends and family took off from work for the day to help me with the cold capping. They could have saved that day for a vacation day! I'm forever grateful to my team members, since it was a big sacrifice for each of them.

Extra Special thanks to Kathy Hartman and Anita Pieri!  💕💕💕💕

Geez! I feel like I just gave an acceptance speech for an Academy Award! hah!

The moral of this week's story is that you can get through almost anything in this world if you have family and good friends by your side. This is the only reason that I was able to cope with it all.

Sayonara Chemo! Hopefully, we don't meet up again anytime soon!


P.S. and forgot to mention that I still have my hair!  Very sparse eyebrows but I have Hair!

4 comments:

  1. Congrats Sue. I'm so happy for you. What a trooper you are. Can't wait to see you at our 45th nest year...lol. Thanks for sharing and keeping us posted. I'll continue to send prayers your way.

    ReplyDelete
  2. Thanks so much “unknown”! ��

    ReplyDelete
  3. Sue, you've done it!! And handled it in SUCH an amazing way! So my final prayers will be for "never again!!!" I thank you for letting us all know how things were going during the process and for sharing so that many others will have some ideas on what one could expect when going through this.
    Big hugs from Kathy M

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