Lonliness During Chemotherapy

Except for my husband, I was all alone when I got my breast cancer diagnosis. We moved to a new city, he started a new job and the Covid pandemic was going into full force. We didn't know many people yet––all of my family and long-time friends were far away. 

Know family and friends are with you on your journey regardless of distance. I asked my daughter not to visit me. Regardless of the pandemic, she was working and could only come down for a few days. I didn't need her to sit with me and watch me do nothing for 2 days as my side effects prevented me from doing much. I didn't want to travel just to take me to one chemo session. 

I couldn’t bring myself to talk on the phone but relied on emails and texts to get me through. Those emails and texts were so very helpful. The cards and occasional surprise gifts I received were so welcome. My long-distance friendships helped get me through a lot.

Gift Chemo Quilt From Old School Friend

I was very lucky to find a connection with a person from the local church I recently joined. After a visit from the priest, he sent me an angel. She visited me each week, arranged for some meals to be delivered, and even brought me to a chemo session. However, the greatest gift I received was her friendship. 

I've since moved back to be near family and friends but we are still close. We check in via text and try to talk at least once every few weeks. I'm retired but she has kids and work. Despite an age gap, we were lucky to really connect,

That priest really knew what he was doing when he matched us. 

Chemotherapy Hair Loss and Growth

 I had my last Chemo with Andriamycin and Cytoxan on Oct. 5th 2022. My hair was basically all gone by then. I missed my eyebrows most of all.

My husband was worried as I wouldn't go outside without a headscarf. He tried to make me feel good about ysekf, I tried to explain it wasn't that I didn't; feel go about me. I know that when I went out with the head cover, people would look at me a little oddly.

I didn't need to make them feel uncomfortable or think they had to feel sorry for me. I didn't need to worry about how I looked as I've always tried to look my best when going out and took pride in my appearance. At home, now that's another story. Bald or in my sloppy clothes, no problem!

He started to notice my eyebrows growing in around the 3rd week in November. Here's me 11/3022

It's been growing ever since. My hair has definite waves that weren't there before! It's also much darker than it was - all over...

Here I am today on 1/30/2023.

My journey continues- sans head cover. Now wat to do about reconstructive surgery? TBD

Chemotherapy Infusion Delay

For those of you following my breast cancer journey, know that I’ve experienced a chemo side effect of burning hands, feet, and any other areas of my skin that gets pressure or friction from an outside source. It's called hand-foot syndrome.

I won't name all of the other body parts involved... 

I’ve been a total lump this week doing nothing. Hard to walk very much and the exercise bike is out. I even have a problem sitting for very long in certain positions.  The effects are still pretty uncomfortable by the evening. I talked previously about some of the many things I’ve tried to mitigate the effect in a previous post.

I was supposed to get my 10th Taxol infusion this week. However, my Oncologist decided no infusion. I get a 1 week break! Next week he’ll either decrease my chemo dose and/or increase my infusion time from 1 hour to 2 hours or put me right on the 2nd series of infusions. i was concerned as I was scheduled for 12 Pacxilaxtol infusions. 

However, my doctor said not to worry that 12 doses were not empirical. He's had patients only make it through 4 or 5 sessions. Let’s hope my body recovers so I can get back on track next Monday, or I may jump right into the Red Devil (Adriamycin)

No I Don't Have Hoof and Mouth Disease!

The burning and itching sensation on my hands and feet were getting stronger so I did my homework. 

Seems I have Hand and Foot Syndrome or Palmar-Plantar Erythrodysesthesiak. Say that fast three times!

It's a side effect of my chemotherapy. Paclitaxel  is one of the chemo drugs that cause it. Lucky for me my next series of chemo with Anthracycline (Doxorubicin) can also produce this effect; so I can't expect any relief soon.

This site has a pretty good explanation of the syndrome and some suggested ways to relieve the symptoms of Hand-Foot Syndrome

The night after my ninth infusion I couldn't sleep. My whole body burned as the little capillaries under my skin died off. Their screaming must have been keeping me awake. 😱😱😱

 I just ordered a full-length icepack that will unfold like a blanket. Ice packs do at least give me some relief. Since friction aggracvates the symptoms, wearing socks does seem to help. Not what I planned to do in the SC heat, but I have air conditioning so I'm not complaining.

Also my skin hasn't started to blister or peel yet so that's a plus. Hoping to avoid that. I just ordered a while passel of cooling sprays I'm going to try to see if any of those help.  

Ugly Burning Left Foot

Ugly Burning Right Foot

Spoiler alert! I may have to look forward to Hoof and Mouth Disease, actually just potential mouth sores in the next round of chemo. Hey, look at the bright side, some burning, itching, or other gross side effects now. It sure beats doing nothing with the potential for a bad outcome in the future.

Meanwhile, I spoke to someone today who has an unrelated chemo side effect of burning feet. Her doctor told her the sugar she was eating was aggravating her condition (caused by a back issue). 

So, do I give up blueberries on my cereal every day and an occasional sweet to see if it helps or, Nah, who am I kidding, I need my little pleasures right now...

Are Your Hands Burning after Chemotherapy?

I read about different skin irritations that you can get from Chemotherapy.  I have delicate skin so I expected to have run-ins with some skin reactions. With Triple Negative Breast Cancer treatments, I'm expecting all kinds of adverse reactions as the weeks progress. 

After my first infusion, I did feel tingling in my arms and legs that lasted all night long and kept me awake. I found a solution to that by using Cold gloves and cold socks. I keep them in the freezer, and take them in a cooler with me to my infusions. Once the infusion begins, I put them on and I'm good to go. No more tingling-or so I thought.

The new sensation wasn't exactly tingling. It was more like burning and itching. I started to feel it in some spots on my fingers, palm side after the fifth chemo infusion. I mentioned it to my Oncology PA. She said some people reported that sensation on the tips of fingers after typing or the palms of hands if doing something physical. 

It's a sensation that comes and goes. It's more prevalent after I've been fixing a meal, opening a jar, etc. I'm feeling it more often as I do things around the house. I find myself scratching the palms of my hands. The itching and burning aren't intense but are still there. 

You can see from the photos that different areas are irritated based upon what activity I've undertaken. I've had the sensation pop up in my lower back, under my thighs after sitting on the edge of a wooden chair for too long, etc.

                     

I'm going to try to keep the cold gloves on longer this week. I got such a good pair that the frozen part is really thick and cold, and lasts a long time. I was keeping them on one hand and switching off so I had my hands free, plus they're really gold. Maybe I'll leave them out a bit before my infusion starts to I can keep them on longer. 

Chemotherapy and The Great Hair Loss

A friend of mine opted for an expensive cold capping treatment so she wouldn’t lose her hair from chemotherapy. 

If I were younger, I’d probably care more but I was ready to lose it, or do I thought.

My Oncologist says I might or might not lose it during the first series of treatments but guaranteed I’d lose it for the 2nd round. 

I had my hair cut extra short, put my hairdresser on alert, and sat back. I have fairly thick hair so I figured it would probably only thin out some in the beginning. 

To my surprise, the morning of my third infusion, it started to fall out! The shower drain was full of my hair, 

My hair was pretty short and wavy so I didn’t usually brush it, just ran my fingers through it. That morning it came out in my hands when I ran my fingers through my hair!

I dealt with it another few days and then made an appointment with my hairdresser to cut it all off four days after the fallout began.

Now that it's gone, it's a bit weird. I don't see myself as much as my husband so I don't wear a headscarf when I'm inside in the SC heat. He doesn't care. I'm often taken aback a bit when I do see myself in a mirror. 

I expect to be completely bald with the next series of infusions. Meanwhile, my hair is really short and any fallout is much easier to manage.!

Getting Ready

My supportive angel

Shave it off!

Layer by layer she kept going

Scar from falling off a horse

Close enough

How does this work

Let the expert do it

We did it together

The new lighter me