I’m back in the hospital for my tri-weekly stabbing and infusion of chemo drugs that make me feel like crap.

Weirdly, I kinda love chemo days actually. I’ve been at this more than a year now so I know the staff and we joke around and have a great time. If there is a new nurse, like today, we play the Mennonite game and almost always know someone in common. This time the new nurse and I went to the same schools and she remembered my brother. 😁 #ihaveacoolbrother

Nurse Mike even had a good joke for me this time: “Why do nurses carry red crayons?” I didn’t know, do you? “So they can draw blood!” 🤣🤣🤣. Now why do I want to buy all the red crayons and give them to all my favorite nurses?

I think my oncologist is the bomb. We always spend a few moments connecting about things that have nothing to do with health. I like her on a human level and am so grateful she’s such a caring and savvy doctor.

I also love my physical therapist, but my time is up with her but I love her so much! I miss her!

Everyone in the Hahn Cancer Center has been amazing!!! So when I say I’m just so incredibly done – it’s not because I’m traumatized by the treatment (I’m not at all – the treatments are easy) or sick of the people (I’m absolutely not, I love every single one of them!) I’m just really emotionally done with how the treatments make my body feel and the frustration that comes along for the ride. And knowing it isn’t over until July – which seems a really long time away.

I think the relentless nature of treatment is pretty significant. I have more compassion than ever for the people in my life who have been dealing with long term medical stuff. Feeling bad long term really gets old emotionally, spiritually, etc.

I’m really just so incredibly done with the whole thing of starting to feel more like myself for two or three days – just before a chemo treatment that pretty much takes me down for the count all over again. Rinse, repeat, for more than a year. This has been a long year.

I asked questions of my doctor.

I asked if there was any scenario where we would shorten this batch of chemo?

“No.”

Her response came very quickly.

I kept talking. And she did listen to me. And I could feel her recalibrating as she listened and I was trying really hard not to cry – and failing. I have 16 treatments (in addition to the original 6) on the books, for a total of 22. I have 5 or 6 yet to go. And she thought about it a bit and checked some things in my history. We left it that we would do the next round of chemo and maybe end there. In the mean time, she’s going to check a few things. She didn’t say it definitively, so I am grateful that we could be nearing the end. But I’m also aware that she could come back with a different suggestion next time, so I will hold off on throwing a “I’m done with chemo” party.

There’s another round of imaging and another surgery and who knows what all else coming up next, so we aren’t quite to the end of this chapter.

* * *

I was diagnosed with lymphedema as a result of the cancer in the lymph nodes, and the surgery to remove 16 body beans and wiring. That wasn’t fun and involved a lot of soreness and an unhappy left arm. My physical therapist worked some wonders and showed me how to reroute the flow to cut down on the soreness.

Did you know that some body pain can be the result of pooling of lymph juice if the system has been interrupted? I did not. The body’s systems are amazing and I am so grateful for her work. I’m kinda sad my treatments are over, I really looked forward to chatting with her. We talked about all kinds of things!!

The beauty of lymphedema was that it did go away and she taught me how to continue the work so I can keep it at bay. That’s huge. I don’t mind too much if I pickup an annoying little diagnosis along the path of this cancer journey – if it also goes away as it should.

* * *

I had a bone density test and was diagnosed with Osteopenia (which is in between normal and Osteoporosis which is severe). This was different. This wasn’t something that was going to go away. That one really took me down a notch emotionally.

Dr Oncologist and I talked about possible treatments for osteopenia. But I am inclined not to medicate for that because that class of drugs (which do indeed return calcium to bones and do make them stronger) can also have devastating effects on the jaw. That means tooth loss and dentures since there is difficulty healing the jaw, so that rules out implants. I’m thankful for the “heads up” from a friend of mine about how devastating that can be so I don’t expect to go that route. I like my teeth. Teeth are awesome.

The biggest bone density loss was in my hips rather than spine, so I don’t even know what to think about that. The side effects of being a post menopausal breast cancer patient are no joke!

I’ve added a high powered calcium supplement to my mix.

* * *

Today’s chemo treatment went well and they agreed to take the steroids out of the cocktail, so I have been much more comfortable today than other times. The combo of the Benadryl and steroids to manage possible reactions is a very uncomfortable mix – kinda like the body was fighting with itself. Let’s see if I sleep tonight?

* * *

I slept like a baby last night! Taking the steroids out of the mix was a HUGE improvement! Yay! Soooo grateful!

So here’s your reminder that this journey can be long, and parts of it can be challenging. You are not alone. It’s important to advocate for yourself and to ask questions. When you notice a pattern (I knew the steroids were keeping me awake at night) then say something to your medical team. They can make changes to improve things. And my Dr Oncologist might come back and say that I need to finish all 16 rounds of this chemo, and I will go into big girl panty mode if I have to. But I did speak up. I did ask for what I wanted. I did keep talking after she’d said no. I did not let that “no” shut me down.

Promise me you’ll keep talking even when you hear a “no” because sometimes it’s difficult because it’s genuinely too much.

You’re the only one who can listen to your body from the inside.

A year is a long time to be sedentary and too weak to exercise or do the things. A year is a long time to be frustrated by all the things I’m not strong enough to do right now. Being strong enough to begin to walk back into my life has to be worth something, so we shall see. The emotional aspect of cancer treatment is no joke, hugs to any of you who have already been at this for a long time. Keep the faith. Keep putting one foot in front of the other. Never give up!

Keep getting the treatment behind you one day at a time. Keep knocking it out. Keep doing the challenging thing, keep being present in your life. Keep being thankful for the people who love you, and reminding them that they matter.

You matter. I will get through this. And so will you!

Never give up!

Sending love your way!

Carmen