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.

Thankfully Burdened and Drained.

Thankful. 

We had a quiet yet very tasty Thanksgiving at home. Phil prepped and cooked everything. It was amazing and so good. I still felt a bit exhausted from appointments the days before. We are kinda in the revolving door phase of appointments- often going in for one, being sent to another and never knowing what fun might be in store. The drain placement was very much planned and I have to admit- I was really really anxious. It was necessary, since we were revolving into pulmonology too often to help my breathing via way of large needle poked into pleural cavity(the spot between lungs and ribs).

Phil and I argue over how many times I've been drained, technical term thoracentesis. Thoracenteses?

At the game with the Bigs. 

It's only half irrelevant since I am now the proud fashion model of a left side drain(indwelling pleural catheter). Every other night, Phil drains it and I have some relief and opportunity to layish for sleeping. And in true Jen fashion, my right pleural cavity got all jealous like and juicy and now we are draining it in office as needed. Being able to drain at home is nice, but not without issues and the placement procedure was so stressful due to my inability to breathe- that I am not jumping at adding another one. yet.

You know it's bad when the bathroom is your "sterile" zone. 

Our first  home drain solo was on the 30th and before Phil's birthday festivities. I've always been the gift that keeps on giving. It went well- despite sterile gloves not fitting and the horrendous rashes I develop from adhesives and dressings- so each change means ripping open something- while trying to keep the general area sterile. Kiera has been an amazing help getting me to appointments and was educated on dressing changes so she's been Phil's left handed right hand help and my comic relief and co christmas decorator. Lily asks repeatedly to watch, she's also been amazing at getting me to rest and giving me much needed hugs and support.

Dos. Not sure dos of what....

I think constantly of my time with my dad and am so sad and grateful for my beautiful children and their gifts. I also hate that our roles have reversed and there are so many things I just can not do.  I do not want to be a burden. I do not want the sick day memories to stick. Phillip and Bella cope differently and are very quiet. I worry. A lot. We have talked a bit about where we are at, what's going on, which is difficult because who flipping knows? So I spent time talking to each of them about the importance of family,  but also having someone else to be their person. Even better is to have people, a tribe- like my mutants. Lily totally grasped this at camp and excels at it. The gingers are quieter, more introverted- covering with some pretty funny shenanigans. They each picked a person or people, then I reached out. It was comforting and excruciating to make these connections. Gratefully our people remind me that these are the honors, not the burdens of loving someone.

Taste testers. 

As for a plan. Here's what I know. We are in what mutants call- Shark closest to the boat phase. I have multiple big sharks circling and we have to try and figure out the biggest threat before another one strikes(Halloween costume make a little more sense now?)

My sharks are the high tumor burden in my lungs, creating the fluid and overall making the ability to breathe rather stressful; big progression in my hip, which puts me at risk for a major break and me not being a good candidate for surgery due to aforementioned shark; a new abdominal node/lesion/tumor that they think is probably a sarcoma- you know just for funsies.

So the docs have been trying to find ways to determine which what is the biggest threat- my lungs decided that first....and now we've submitted genetic tests to see if I have any markers to indicate one chemo might be better than another and I failed at even attempting a biopsy because I can't lay on my back. SO I've gone from saying lets not just thrash and burn, lets be specific to saying- um guys- we gotta do something and quick- I'm drowning and there are sharks. And when there are sharks- Mutants Assemble. I am looking forward to next week being filled by 3 of my favorite sisters being here to attend to the chaos of where we are.

My future will involve icky chemo and we are weighing options and agonizing over "options" while draining all of the love and hugs I can into my family. No one knows what the future holds. A few days ago, a gunman walked onto base and took lives. Every day I am thankful Phil comes home, my children are doing ok, and I am here with them. I reach out when I can, talking on the phone is very difficult with the oxygen, so text and messaging works better for me.

Speaking of oxygen- I have Johnny 5( he's the big air compressor I use at night) and Vader- the lil loud guy who I lug around with me, thankful for the breathing.

"Jenny- I am your BREATHER!" - Trish