Losing My Voice

Phil constantly asked if I tested how far the oxygen tubing would go. I didn't. He's an adventurer(hence his gamble on me) and I play it safe. I research, then think, then ponder, rationalize, then research then maybe decide or wait for a sign. I was so happy to have the oxygen, my life raft with a tether. Yep- that's a summary of something- surrounded by a world of oxygen and need the stuff in a tube. I'm fancy like that.

I would get the tube of vader caught everywhere, hated taking him in the bathroom, would wipe down tube, double check my pulse ox and his battery obsessively. I was afraid to go out- his battery not lasting more than an hour. Despite the fact that I could barely last more than an hour- we predetermined power sources and had a power cord in the car.

After a couple oxygen related anxiety attacks, one morning, Kiera and I tested how far Johnny 5's tubey could go. she rapelled it over the railing -and fed me bits as I safely walked from the back door to the front door, in and out of the bathroom, over by my desk. I now could move around the house without worrying about battery.

We still had plenty of appointments and Vader still causes stress. Which is silly, since he provides so much relief. I'm getting better at keeping him charged, stopping before I get stressed and we are working on getting back up batteries.

After several appointments, pleural drainings and time, I ran into my Onc by the entrance to the hospital. She had been on leave, and come to find out she was at a breast cancer conference and had some ideas. I was really struggling and tired and felt like I was gettin a little worse each day. I just looked at her and said- we have to DO something. No more waiting. I needed to breathe and then we deal with the other sharks.

When this started, I was very much in charge of treatment. I fired my first oncologist who was very by the book- plug shit in the computer and see what the biggest percentage for success was. I was a mull every option- figure out what the best option for ME was. More than one doc had to be educated on how to "work with" me on treatment, otherwise I cut bait. That was over 6 years ago- several treatments ago, a few progressions ago. I have different experiences now, my body has been through a lot. Most of all I am tired and I know the road is not over yet. But I need help.

The next time I went in to clinic- the plan had been made, but no one had talked to me about it. I was torn between grateful for options and what the actual fuck? I needed to look up meds, I needed to understand why. Was LFS taken into consideration, because we were already behind. I accepted one of the meds and said no to the other until I could do research. My new plan means weekly visits- so we made an appointment for the following week and I was armed with a plan to research. We were also waiting on genetic tests to come back- I was tired of waiting. 6 years ago- I would wait. I could breathe 6 years ago.

We are continuing the Herceptin and Faslodex which address hormone aspects of my cancers. I continue the denosumab which addresses keeping my bones strong- since I have new bone metastases- we have to be very careful of fractures. The specialists were split on the mix of what was arthritis and what was cancer, but there are definitely both in my knees and hips. The new chemo is an old chemo for me Abraxane. It worked on lung mets before and it's the slash and burn. Fingers crossed it will work again. Then we added Avastin. This was the one I was unsure about. It had a relatively low side effect profile- the main SE's being high blood pressure and fatigue. I worried about the blood pressure, although my team mentioned it was very treatable and they monitor closely for changes. I went home and went online to the support groups.

I learned 10 years ago when I started searching online for help with Lily's treatment- that the side effects you learn about from real people are very different from the ones that are reported. How they are treated is also different. I learned a few things. Most people online had suffered high blood pressure with Avastin- which makes sense, they went online to find help. Most people don't go looking for help when they don't need it. Another weird side effect many had was hoarseness. Some lost their voice completely, others said it was worse after infusion then got better. This was pretty ironic to me. Over time, cancer and treatment take a lot away from patients and their families. Now it was literally taking voices. wow.

Avastin works by stopping the growth of blood vessels. Which cancer generally has an extra supply of. By adding this in- we are targeting many sides of the way cancer is trying to outsmart my immune system. It also makes sense why it would cause issues with blood pressure. So after discussing this and future options with my onc- I settled in for my first treatment.

Even though I kinda knew what to expect, you just never know what SE you will get. So one day when I woke up and noticed my voice was just a creak I was mildly amused. Kind of like when you have laryngitis and it's a novel funny thing. I would be talking and mid sentence there would be no volume. I went back to the online groups to see if anyone found a solution and it all seemed to be pretty random- so I kinda figured not too shabby. I'm not a public speaker, the needing oxygen thing makes long conversations not practical or comfortable. It doesn't hurt, so that is a bonus.

I just finished my first cycle(one month). It will take the team to keep me on track as I have certain meds certain weeks, others other weeks for 3 weeks and then 1 week "off". This week is "off" and I am hopeful. The swelling in my legs and feet is down significantly, the fluid around my left lung is less uncomfortable- I can lay down! At first it was a tetris of pillows, and I learned that laying down hurts my hip- go figure. By decreasing the angle- I decreased the pressure on my hip and slept normally for a couple of hours the other night. My hair is falling out and Kiera requested the honor of cutting it- so we did that. She did a good job despite the challenge of a moving target.  I would guess in the next couple weeks it will be gone. I am exhausted. The fatigue is no joke. Naps are a necessity and much approved by Dobby. It's tough- I'm hot, then cold, yes, then no but will take it over not breathing. I feel like we are back on track and am hopeful. And I've learned that losing my voice does not mean I won't be heard and having a voice doesn't mean you will be understood.