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

Breast Cancer Chemotherapy Hair Fallout Update

I had my hair cut short to make future fallout easier to manage. My oncologist said it may just thin out until the next series of infusions. My hair started falling out 8 days into my Taxol (Paclitaxel) infusions. 

It certainly thinned out. It looked like I had a white baby chick on top of my head, only much sparser.

It was no big deal to me, but I kept checking just to see if any more would fall out. I like to be prepared. 

Two days ago I had my second dose of Andriamycin and Cytoxan. My husband came up to me and said, I think your hair has grown and asked me if I wanted to have it cut anymore. I put my hand up to my head, touched my hair, and felt something fall onto my neck. I ran my hand through my hair and, you guessed it, it was falling out–and I mean, FALLING OUT. 

I went to the kitchen trash can, ran my hand over my head and it was like snow falling down. I guess this is the start of the next few days or weeks. Luckily I have dogs to blame for the build-up of white fur on the floor!

The Upside of Chemo Side Effects

 So you thought Chemotherapy was going to be all nasty side effects, feeling awful, looking for answers, wondering what to expect next, well yes- that's all true.

However, there is an upside to your chemotherapy side effects. No, I'm not completely insane. Well, there are times my family would disagree with you, but I digress. 

The point is you are busy with those side effects. They take up your thoughts and you put so much effort into managing them. 

Are you too tired to do the laundry, what's my alternative? Do I take a nap or empty the dishwasher? Why are my hands burning and why won't it stop? Do I feel nauseous enough o take my antinausea meds or am I concerned about being constipated later? If I take something to ensure I won't be constipated, what happens if I end up with diarrhea from my chemo? (Notice a recurring concern here). Will all of my hair fall out at once or will it be a more gradual thinning? Where can I buy good head covers for my balding head? Will I feel better if I buy a silk pillowcase for said balding head? What about bamboo sheets or nightgowns? Did I wash my port shirt? Did I email all of my friends or post an update on facebook? Do I feel like calling my sister? 

The list goes on and on. 

Sometimes you spend time thinking about whether or not you're too tired to do something or if you're in the mood to speak to some people about what you're going through. It's not that you don't want social interaction. Sometimes it takes up a lot of energy–sometimes you don't want a pep talk. 

There are so many things we deal with and think about with our chemo side effects that it becomes all-consuming. That's right all-consuming. So here's the good news. You're not spending time thinking about how effective the chemo might be. You're not thinking about the long-term consequences of having cancer or any recurrence. 

Yes, you thought about those things in the beginning and those thoughts may come into your head from time to time. However, you're so involved with what's happening to you at this very moment that those things are not in the foreground of your thoughts. 

So let's try to be positive and deal with any crappy side effects that may hit us upside the head like a sledgehammer or sneak into our consciousness like a thief in the night (before doorbell cameras). These treatments are only for a short moment in time, or so I tell myself.

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...

Breast Cancer Tired But Sleepless?

Every week after a new infusion I feel more and more tired 🥱. Everyone says relax, read a book, watch tv in the middle of the day, do nothing. Yeah right. I try, I really try but there are some things I have to do. Luckily we’re able to hire someone to clean every few weeks, but there are some things that must be cleared daily. We’re two very messy people, clutter could be both of our middle names.

I seem to have lots of phone calls and computer work to do. We’ve only been in this new house for a little over a year and there’s always something I’m having done or making sure it’s done right. 

Then there are the insurance forms and medical bills to handle. We have complicated insurance so I’ve spent a lot of time calling, clarifying, paying, uploading documents, etc.

Regardless, I can handle all of it as I usually do with some breaks in between. 

Granted I’ve had sleep issues for about 31 years. That’s right, my husband used to be a world-class snorer. Eventually, that led to a CPAP machine. Not so bad if you have rugs and soft window treatments.

Now we have a smaller bedroom, no rug, and window shutters. Looks great but the sound seems to carry. Oh yes, we no longer Iive on a farm with no neighbors in sight or within hearing distance. Now we live in the suburbs in a neighborhood with very little space between houses.

I also have some past medical issues with sleep movements but stopped taking that medication last year. I also have an issue with repetitive sounds…

So maybe I’ve covered some of your issues or maybe you have no sleep issues. However, don’t be surprised if one of your side effects of cancer or your infusions is insomnia. I had my sleep issues under control. We have a new remote-controlled mattress. I always wear a sleep ask and I’m serious when I say this: I either wear these heavy-duty construction ear muffs, some lighter-weight electronic sleep earplugs, or at times sleep in a different room from my husband. I've even resorted to sleeping pills since my side effects increased.

I’m not particularly sleepless over cancer. I think about something I should get done the next day or about nothing at all, I would just lie awake the night after my infusion or sometimes any night really. I recently tried sleeping pills. I’m playing with the dosage with my doctor's help. I need a stronger dose that first night and can go with a half dose the rest of the week.

However, not sleeping for whatever reason is Not a good thing. I know it’s important to rest in between treatments. After a week of pretty good sleep, several of my blood levels that were dropping steadily each week bumped up a bit! I’m mostly just over the line into acceptable levels! The only thing that really changed this week was sleep!

So whether it’s industrial earmuffs or a mouth plug for your spouse, get some sleep!

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. 

What Is TNBC?

There are several websites and articles that will explain Triple Negative Breast Cancer (TNBC) in greater detail than I can here.

TNBC doesn’t have receptors for estrogen and progesterone hormones, and the HER2 (human epidermal growth factor) protein. Most breast cancers are positive for one or more of these. Since it doesn't have any positive receptors for those 3 categories, you end up with Triple Negative.

TNBC only appears in 10 to 15% of breast cancer cases. Its usual targets are Black or Latinx women, under 40, with a BRCA gene mutation. A BReast CAncer gene mutation indicates over a 50% chance you’ll develop breast cancer. 

Without hormone receptors or HER2 receptors to target, TNBC is tough to treat. It spreads quickly so often surgery first, followed by aggressive chemotherapy. Depending on how large the cancer is and if it’s spread into the lymph nodes, radiation may be included in that package. Some patients may also need immunotherapy.

There are no guarantees with a TNBC diagnosis, but with more aggressive treatments used recently, you don’t read articles labeling it a death sentence published by the NIH as recently as 2017. 

So if you are a lucky winner in the TNBC lottery, things are looking up!

TNBC often recurs within the first 5 years after diagnosis and any surgery or treatments you undergo. Most other breast cancers could recur much later after 20 or 30 years. TNBC may recur in another location like your bones or brain.

However, with more aggressive treatments, you can reduce your chances of reoccurrence. Remember, nothing is a guarantee, so this is a personal choice as to how much you are willing to endure to ensure you don't have to deal with this nasty bugger again!

Talk to your Surgeon, Oncologist, Radiologist, Priest, or Shaman. Pray on it. Do your homework. The choice is yours as to how to handle this roadblock life has thrown at you. 

I won't be your personal cheerleader, but I can give you some idea as to what to expect, how to deal with what you may experience, and/or maybe even a laugh along the way. Join me on my journey into Triple Negative Breast Cancer....