Where have I been?

The last 10-ish days have been some of the worst health-related days of my life. To be honest, I don’t know what I would do if I had to do more than “just” one more session. 

Early on, I told people, “I’m ok now, but I expect I’ll need help later.” Little did I know. I sent out an SOS message and my friends have rallied. Yesterday I had six people here cleaning, working in my yard and taking care of me. Today, two more. Tomorrow, two more are expected. And a calendar has been built to check in on me. Help me get the right food. Keep the house clean. So much coordination so fast. 

I am on a liquid diet right now. I don’t know yet if it’s working. I’ve cried from pain every day for a week. My sleep is terrible. So many wake ups. Bad dreams. It’s all restless. 

I’ve been thinking so much about my friend Lori, who died from cancer 10 years ago at age 50. She’d had chemo before. She was hesitant to go through it again. She followed a snake oil plan and when she changed her mind, traditional medicine couldn’t save her. I would get so angry at her when I’d think about it. She died the month before mom. And that broke mom’s heart. I was angry she didn’t fight. But now, I get it. She was in my life for such a short period of time, but she made a big impact.

Last week I went to soak in Alison’s bathtub. I cried for Lori. I cried for me. I felt like something inside me broke. When Lori’s cancer came back she shunned those of us who would’ve been against the snake oil path she took. I remember the last time I saw her vividly thinking, “Oh, she’s dying.” Then she left town without a goodbye and we never spoke again. 

I’m just seeing this as I write this. I’m choosing a different path from Lori. I’ve rallied my friends. I’ve told them I can’t do this without them. That, yes, I really want to quit (yes, I know it’s only one more treatment), but I won’t. I want to give myself the best chance possible to live as long as I can. 

And when this is done, I’m going to say YES. Yes to life and all it brings. Wanna go…YES. Wanna do…YES. 

Just know if I’m quiet it’s because I’m hurting. And hopefully healing. Thank you friends for helping me make it through. 

Hard week

This has been a really hard week. I don’t really want to talk about what I’m experiencing, but it’s been difficult and painful. This morning I woke up with a big red sore on my eye. It’s been frustrating and disheartening. I feel weak and it’s been emotionally trying.

Yes, I know, “but only one more time.” But it’s hard in this moment and also fearing just what the last time will be like. 

Rough night

I had a hard night. Not much sleep. My bowels are wreaking havoc and my body is so tired this time. 

Monday

I am still very tired. I didn’t sleep well last night, I’m guessing because of yesterday’s nap. My body feels very heavy. This morning I felt like I had straw in my nose. My head hurt last night, but I’ve had very little bone pain today. A tweak here and there, but nothing like before. Ditto my finger tips. 

My chest feels tight and my dog ears are bothering me quite a bit. I hope I hear back about PT or massage soon. (Paperwork issues.)

Sunday

I’m doing ok. Tired. Haven’t needed to take anything for the bone pain today. 

I’m so dry I feel like I have dust everywhere. Like hay might come out my ears. Everything smells and tastes dusty. 

My body feels heavy. My finger tips continue to hurt on and off. My chest feels tight. I can feel my port. I don’t like that.

Self injector

Just before 4:30pm, it started making a musical noise. I felt the needle pop out and there was a little prick. Jingled the whole time. High pitched buzz when it finished. The needle retracted and I peeled it off. It was not on too tight, so I think it would’ve been itchy and inflamed by tomorrow. 

Neuropathy

I feel it in the red parts of my fingers. All the way through. Makes my nails feel funny. 

I’m tired. I woke up yesterday at 2:40am yesterday and never went back to sleep. Feel asleep about 11pm last night and was up over an hour in the 3am-4:30 range. The blinking green light on the injector gave me a start went I went to the bathroom. 

Took my steroids this morning and will again later. All totaled (I take three days worth, plus get a bag during treatment) it will make for some restless nights. Hopefully a little more wide awake today than I am right now. 

I’m working because I know I won’t be up for it at least on Monday and would like to get something turned in today. 

 

All done

All done. My appointments run about four hours. Today I met with a nurse practitioner. She was very sweet. Basically said my side effects will probably be similar this time to last time, but not worse. She did say the fatigue will increase. 

The ice block gloves continue to be the worst part. They did not have any gel gloves, so my hands were not as red today. But, I felt neuropathy in the middle three fingers almost immediately. I sprayed on some magnesium oil when I got home and it’s feeling better. 

I do not have to go back for a shot tomorrow. They stuck on an on-body injector that will give me a shot tomorrow about 4:30pm. 

While we were there two people got to ring the bell to celebrate finishing chemo. It was very exciting and everyone applauded. Mom never got to ring the bell, so I’m ringing it proudly next time. I know she’ll be there with me in spirit. 

Bye Witches

 I’m off to chemo #3!

Jack

I know I’ve been quiet. It’s because I’m feeling well and have nothing to whine about. 🤣

So here’s a picture of me and my brother Jack comparing bald heads (but not chin stubble).

I finished a book!

This is huge. I finished my first book of the year! (Checks notes, sees I’d read 10 books by this time last year.) “We All Live Here” by Jojo Moyes. Not my most favorite of hers, but I finished it. 😊 I have missed reading, but have struggled with my concentration. 🧐 Next up is one from a “mystery” series I have followed for years. “The Great Hippopotamus Hotel” by Alexander McCall Smith. It’s book number 25 in The No. 1 Ladies Detective Agency novels. It will be light and fluffy, just what I need!

NOW I’m halfway there

I definitely turned a corner today. I even made myself some salmon for dinner! I could kinda taste the sauce. 🙌

Wah-wah-wah

Chemo makes me feel like a big whiny baby and I know I’m on the you-got-lucky level, not the big guns. I just want to feel better, you know?

This second session has been more difficult with more side effects. I’m still having some food aversion and nausea issues, which make it hard to eat. The bone pain had abated by this time last time, but it’s lingering. Not horrible like last week, I just feel aware.

The thrush mouthwash seems to be working on the film I feel, but the texture thing still gets me. And when I spit it out, it looks like butter. 🤢 

Everything smells dusty. I don’t know if that means I’m losing my nose hairs. My nose is a little bloody too. 

Somebody’s having a cranky Monday, can’t you tell? I didn’t sleep well, so I blame the time change. 

Bwahaha!

I asked for some thrush lozenges because they helped after I was super antibiotic’d up post appendix burst. Instead they called in a mouthwash that was delayed several days because they were out. This is what I picked up a little while ago:

Eight bottles. The RX is one teaspoon four times a day. Think this will last a while. 

I almost spit it out immediately because texture is a real thing. I was able to convince myself it was “cough syrup like” and got the swishing done. 

Question: Does it hurt to lose the little hairs on your head?

Answer: No. The hair headaches did go away a few days after the buzz. But those little mf-ers are everywhere. 

Maroon 5

Been a fan for years. Matter of fact, I bought a solo ticket to see them last time they were in San Antonio. And my appendix burst. 

When Erin asked the Diva’s if anyone was interested in their residency in Las Vegas, I hesitated just a second before saying YES! Guess what today is?

I have promised my friends I will never attempt to see Adam Levine again! 😂

I am feeling better today. I had a restless, painful night. I shifted and listened to my bedtime story like six times. Tried an extra melatonin. Then an extra Xanax. It makes for long nights. But I’m hoping things are shifting and I’ll be feeling normal again soon. 

Mouth of Death has been back a few days. Everything tastes terrible. Even the dogs smell my breath and are like Whoa. 

Since the first chemo, everything has tasted off. It’s like my tongue has a rim of salt on it. I’ve asked for a prescription for thrush meds to see if that helps. Hopefully HEB texts soon.

But the Mouth of Death. One day I thought it tasted like dirt. Now it’s just like something died. I think the oncologist appreciated my description last time. 

So I fall into the segment of the OG Measles vaccination that is probably not still protecting me and could use a booster. But I can’t get one. I am officially immunocompromised. I’ll have to ask the oncologist how long I fall into that category post chemo. For now, masks are still my friend and staying out of crowds reminds me of Covid. 

Dr. Lang said the second session might go easier. It has not. Adding in the gastro issues and actually crying because of how I felt on Thursday made it the worst day since starting. 

But I will keep my fingers crossed that next time will be better. I try to keep in mind it could be much worse for much longer and that next month things will start to return to normal. A new normal, yes, but back to living life. Going places, doing things, seeing people and eating!

I’m not naive that there are not still adjustments to come. Tomorrow is two months since surgery and things continue to heal. Sometimes the scar hurts. My arms hurt. My golf balls (dog ears they call them) bother me every day. But I’m ready for PT and to get a massage soon (I haven’t laid on my belly yet). 

So, yeah. Reminding myself to be gentle with me in this moment and still feel ok about looking forward to the future. 

I’m wondering, are there any questions I can answer? Specifics about what’s happened? Something that’s bubbled up by something I’ve mentioned? You can leave it anonymously here or DM me and I’ll answer. 

It got progressively worse last time too

Oof. The pain was bad today. I had to finish my last hour of work and was in literal tears. When I was able to, I put the bed at zero gravity and turned on my electric blanket to lay on top of. That with an Advil and a Xanax and the pain has abated. 

Every time I think of how to explain what it feels like, this cartoon comes up. It’s shocking and I can feel the bones just like you imagine this would feel like. It’s mostly my back and shoulders. It was my lower back last time. 

Food aversion

New symptom today feels like food aversion. Like I think of food and feel 🤮. I had the dry heaves brushing my teeth this morning. I’ve had some yogurt and cereal that seem to be doing ok. 

My little hairs are falling out. 

I’m working today. Thankfully it’s quiet. 

Tuesday

I took off all of yesterday and slept in today. I may login later. I have to keep reminding myself that it’s ok to give myself some grace and time to rest. 

Monday

Today has included pain, nausea and neuropathy for the win! Oh, and constipation, but no one wants to talk about that. 

I remembered, but had forgotten

The bone pain started again last night about 5:30pm. It makes for long hours when you just ache. My neck, collar bone and chest have been hurting the most. I’m alternating Advil and Tylenol every three-ish hours and that helps, but just knocks the pain level down, not out. I’ve been doing the zero gravity position in bed this morning and that helps too. I clearly remembered how much it hurts, but I’d forgotten too. 

Tired

I felt good this morning. Normal. Then the tireds hit about 2pm while I was visiting Alison. (She loaned me some magnesium for the neuropathy). Since then I’ve just been hanging with the girls. Watching the new Antoni food/ancestry show on Hulu. May watch the Dylan movie later (also on Hulu). Have had some soup along with an avocado with corn chips just now. 

Ok, so it’s just a documentary on the Dylan movie. Like I said, I’m tired. 😉