Episode XXXV - It's just another manic Monday
Taxotere Dose #4
What a great way to start my day, getting the kids ready for their first day back to school. My oldest was off to 8th grade. My youngest was going to 1st grade. There was a lot of excitement and some nervousness in the house. But as you can see... they were mostly happy!
Our family on the first day back to school!
As soon as I dropped the kids off at school I headed directly to the cancer center. I was not able to go to all the fun I-am-an-awesome-and-involved-parent coffee and breakfast events. Instead, I was off for a visit with the doctor and a dose of chemo. I usually drive myself to chemo, which seems to surprise people. I guess they expect me to be more in need, but usually I feel relatively normal until a few hours afterwards. I have always been strong willed which can work for me or against me, depending on how I use it!
My appointment was early, but it was going to be another one of those long days. I did a lot of sitting and waiting. At some point I will learn to bring things to do, but with all the technology on the cell phone I had enough things to entertain me.
I'm back in black, ACDC Back in Black song
(Thought my nephew would like that song reference!)
When I got called back, I actually opted to walk on the scale backwards while making a slight "beep, beep". The nurses just laughed at me! I figured at this point, I have no desire to watch my weight increase or my blood pressure after I had seen the scale. I discussed that with the Oncologist, who only reiterated the awesomeness of weight gain and how it was a good thing in cancer treatment. He also explained that Taxotere caused fluid retention. I think he and I have a different definition of fluid retention... I call that fat! While the actual appointment with the Oncologist was brief, it was mostly encouraging. The size of the mass felt like it was shrinking. Good news - chemo's working!
In my heated comfy recliner getting my chemo groove on.
I spend each of my treatment times with a few goals. 1. Learn something new about someone there. I really wanted to learn someone's story and hopefully connect with more cancer fighters. 2. Try to make someone else laugh or find joy. I have been fortunate to be in a good place about my cancer and I only hoped to help someone else find something good too. Even if it was small or for the moment. I spent my morning doing those things during treatment.
My chemo bag and sitting station for the day.
On the way home from treatment, I stopped off to meet some friends for a quick lunch. A friend was moving away to Florida, so it would be the last chance I had to see her before she left. I was so glad that they waited around so I could see every one and get an opportunity to visit before she left. Even though I am tired after getting chemofide, I really was glad to have some great company and a bite of food into my system before the side effects kicked in. Thanks girls!
That was not a tan... it's a hot flash!
Always after treatment the side effects get more intense. Usually, I am going to get side-swiped with additional and amplified mouth sores, hot flashes, and multiple pains. It was no different after treatment - I got bombarded a few hours later. It would not be so bad if the treatment side effects were just the issue, but now I have a number of symptoms that just linger as a daily annoyance.
My hands have swollen up, so my rings are off. My throat fluctuates sores and sensitivity, but I kept using Prevention mouthwash to help. My nose was bloody or obstructed, but saline nasal spray helped. My body had multiple aches, pains, and soreness that just hung around reminding me they were there. I get it, feel free to stop!
The most annoying issues were related to the nervous system including muscle shaking & cramps, slurred speech, tinnitus & hearing loss, lack of cognitive functioning, balance loss (aka. tipping over), taste changes, additional constipation, and peripheral neuropathy (aka. my non-dexterity hands). I had all of those in spades, but the Gabapentin assists with of some of the muscle issues. These side effects tended to pop-up at random unexpected moments and get more severe the more tired I was. They occurred daily and liked to remind me they were there. I get it, feel free to stop!
Even with pains...
I was happily waiting for kids to get home from school.
I was now more fatigued in a way I can not even describe. It was as if I had run an insanely long race and was beyond exhausted, where each muscle felt worn out and tired. Not only did my body ache with exhaustion, I was just crazy tired. My eyes would get so heavy I could not hold them up. Often they would start to fall down one at a time making me look like an odd, one-eyed blinking, drugged out zombie.
It went beyond the physical into a mental exhaustion too. I was definitely into full blown chemo brain! Like when I showed up for an appointment, but was actually a month off... guess I will go back next month?!? My mind was tired. Conversations often felt heavy and difficult to follow. Sometimes I could not remember what people were talking about because I was so mentally zonked. I was forgetful, unfocused, and unable to multitask like I used too. Add all those things to my newly and random slurred speech, you may not know what I was talking about. Heck, I may not know what I was talking about!
All my side effects were "normal" for treatment. The best way to think about it was - Yes, I have side effects. Yes, they stink. Yes, I am managing them the best I can.
A concept that I have really had to learn! And one that has really been so beneficial to making my days more tolerable and easier. At first, I was confident that I would just do it all even if it was not always the best thing to do for my own health. I did not want to put any one else out. My friends were busy. They have kids, work, and lives... their plates were full. It took me a while to just say to myself, that it was alright and that they would not offer unless they wanted to help.
So, I have now begun accepting help that friends have so generously offered. My daughter rides home from school from a neighborhood friend. Knowing that my late afternoons are often my most difficult hours, I now have the luxury to actually rest rather than rush to go to the school. I have had meals brought to me that have given me relief from cooking dinner (often for multiple nights). Some nights standing in the kitchen making dinner was so painful that by the time I sat down to eat, I just want to go lie down in bed. That break allows for me to just relax and eat, as well as prevents the cleaning up the food prep and dirty dishes!
A wonderful meal made by a friend... I was so grateful.
In my head...
Getting used to a new schedule has been difficult. During the summer I had the luxury to just schedule things I needed to do based off of how I felt. I could put things off if I was tired or do it another day. Now I have to get the kids up, ready, and off to school no matter how I feel. Now I have to have some energy to deal with homework and activities that occur after school. Now the general daily tasks (groceries, cleaning, walking, eating, etc) still have to be done. Those daily requirements are only more difficult because chemo has bombarded me with side effects. I am digging deep into my strength to create a new coping schedule and "live" through my treatment.
However, with all of those issues comes a lot of excitement and joy... just being able to participate in life is joyful right now. The fact that my daughter wants me to come to school and pick her up because she loves me so is heartwarming. The fact that my son still comes home and shares what happens at school is amazing. All these little things are what I am so grateful for! To not just exist during treatment, but to live!
"Great acts are made up of small deeds.”
- Lao Tzu