Wednesday, December 14, 2016

Tick Tock Tick Tock Could be a bomb, Could be a clock.

Sometimes its easier to play things down. But honestly you don't know what's being played down til after the fact. I don't feel like I play things down, but a few friends say otherwise. I mostly like to talk in circles so only the dedicated ones hang on. Gotta weed out the fluff.

It's the "HOLIDAYS". There are a lot of social events during the "HOLIDAYS".

It's difficult on many levels. Energy wise. It takes planning. Usually I start to fizzle out after about 7:30. It used to be 8:30, then 8. Which on a day to day basis is sort of the time Phil gets home from work.

The social stuff. Absolutely draining. Part of it is the super shallow stupid stuff- like finding something to wear. Since being on steroids I've gained a lot of weight. And steroid weight gain is a fun thing- they call it moon face. Because your face explodes in chubby juiciness in every direction. And the belly roundness. Which is stupid right? I'm here- I'm alive and I feel horrible in my own skin. I don't know whats worse- the 3 year old telling me how fat I am repeatedly or the acquaintance tripping over themselves to tell me how good I look(please still tell me I look good- I appreciate it even if you are lying). I am reminded of my own damn posts about being present and being IN the pictures but when I see the pictures the PTSD sets in- the old familiar- someone is on high dose steroids for long enough- because well there is something wrong. I don't recognize the face looking back.

At my last treatment, surgery was plopped on the table. Now, it has been ON the table for months- I just keep batting it away. I don't want to die from a tumor. But let's face it- that is the trajectory I am on and have been on for YEARS. The treatment could kill me, the treatment could fail me and the result will be the same and really where is the blame? Does blame help?  I also don't want to not be me. I watched my brother not be him. I watched my dad not be him. As my mom gently reminded me- had we caught their tumors early at the non symptomatic stage- we might have had more valuable time with them.  I think of my so many dear friends with loved ones suffering from dementia or Alzheimer's and the years and years of added time with loved ones who bit by bit lose pieces of themselves. It is not an easy road. I don't want my kids to remember that. I don't want to be a burden. Surgery alone presents a burden of scheduling and help needed. This is not something we will be able to do without help.

Tomorrow we meet with the new neurosurgeon. My onc warned me. It's time for surgery. Everyone is in agreement, except me.  As I wrap presents and drive kids to activities and try to go for walks(enjoyment is now limited by plantar fasciitis- heel pain due to aforementioned heinous weight gain) and make dinner and type, I think these are all things that will be put on hold. We will hope for the best. But I've had a series of friends go in for seemingly simple procedures that ended up with huge complications recently. Its a huge reminder of how big this is. I am tired. I've been on treatment for years. My body is not as strong as it was for other surgeries. It's overwhelming and quite frankly I can't think about it without crying and a bit of panic. Because I am just not ready. I am not ready to stop- the slowing down has been so beyond frustrating. I don't want to feel shitty for weeks on end and sleep away precious days. It could be fine. I don't want to rely on friends and family to take care of my kids and do all the things I do. I know there are so many happy to help.  As I make mental notes of all the things I do that will have to be covered, I am alternately impressed and pissed. It's a lot.

If one more person mentions being merely here and alive for my kids is important I might have a throat punch waiting. Coordination or not - pre or post surgery- I will find you. If you have never loved someone who is no longer themselves- due to depression, anxiety, dementia, alzheimers, brain tumors or any condition that requires someone to have full time care- please do not presume to tell me what is important. You get to make your quality of life decisions and I mine. Yes I want to be here with all my heart and being. I want to BE here. I remember laying with Lily so sick, so many unknowns, wishing it were me instead. I wish it worked that way- I would gladly do all this and then some if there were any guarantees to protect them. I wish I could save them from the aches, the realities. So I lead by example I guess- I try and do what's best for us. And as my husband has been told before- yes I realize that we at less than 50% potential are probably still better than some of the blobs out there posing as humans. But we are us because well just cause you can slack doesn't mean you should. I will rise to the challenge. We will make the best decision. It just still sucks. I am feeling the suckiness of it more these days. It isn't easy sharing- but Phil is bearing the brunt of my negativity and that is not healthy for either one of us, as he is my biggest support.

So tomorrow, Thursday it is- decision time. We will meet, we will process, then we will plan. We will call in our reserves. Remember years ago when I said I'd save the asking for help for a time when we will need it. That time is coming. It makes me a bit nauseous actually so I have to go do something else right now. Tick Tock. Could be a bomb, could be a clock.

Wednesday, December 7, 2016

ROW, ROW, ROW Your Boat

You know it's pretty awesome when your husband meets your friends and is completely awestruck. I have several strong, brilliant ladies in my life who have this effect on my husband.  You know you are in a good relationship when he turns to you and points out one of your friends is probably the coolest person he's ever met and the strongest and I am neither jealous nor offended, I completely agree.

One of these amazing ladies is my friend Row. We met online a few years ago. After some messaging we had a couple Skype dates. She would play Jenga with Bella. How one would ask- who? what? really? Yes, yes they would and it worked. Because things many don't consider- or consider an impossibility become possible when Row is around and it's always an adventure.

A couple years ago, her health was poorly. Things looked very grim. My heart was broken.  You meet people who seem bigger than life and to see their mortality- hits hard. My dad was one of those people. When he died, I quietly resigned that death was a part of life. If he could not beat cancer, no one could. It wasn't a fight. There was no battle. It wasn't about winning. It was about living. And dying. Time was the now. You could embrace both life and death gracefully or you could fight and fight and miss the living to avoid the dying. Yet Row recovered and despite many obstacles, she lives with a force I admire.

When Phil and I travelled to Europe- there were many many countries on our list-  Ireland, Scotland, Pretty much the whole UK, France, Italy, Germany. It was so painful to narrow it down- but we decided we wanted to actually see the places we visit- not run through whacking people with selfie stick go-pros as we see many other tourists do. We wanted to sit in pubs, enjoy the food- look around at the people. Ireland and Scotland were the first to be eliminated because- honestly if we go- I'd dedicate months to visiting just there. Row lives in Scotland. That was one of the toughest parts- I was eliminating a visit with a friend. So what does she do- she caught a train down to visit us when we were in London.  Row has some mobility challenges and uses a wheelchair full time. And she caught a train to London, from Scotland- to have dinner with us. Oh yeah- here's me sheepish. baaaaa.
Maturity is overrated. 

We go to dinner in London and visit the Victoria and Albert museum with Row and a good friend of hers-an equally impressive lady. There is really something to be said for surrounding yourself with good people. It really makes everything better.  It also doesn't hurt to do museums with an art/history major- kind of like our first date- but within minutes it was like we'd been hanging out forever. So when Row said she was going to start planning a trip to Hawaii, I didn't for a second doubt it would happen.

Phil and my mom constantly mention I need to stop making it look easy and Ok when it's not. But here's the thing. When people ask how you are- they want to hear- ok, fine, good. Seriously only really miserable people want to hear you are doing poorly- misery loves company all that jazz- back to the surrounding yourself with good people thing. I don't like to share when I'm miserable and there are a few lucky people who get to be on the inside for it- and I don't think any of them particularly enjoy it. I know Phil doesn't, but well he signed the contract- sickness, health, til death do us part- yada yada. I am a caretaker, so when Row confirmed her travel plans- I immediately went into prep mode because our house is not accessible. At all.  And I know Row wouldn't want me to worry and she would just do- but she is precisely the person who I am happy to do for- not because I think she can't - but because I know she CAN but just want to make something a bit easier or more relaxing for her.

I've seen young adults who survived cancer as kids and so much of it becomes their identity. They become a cancer kid. I've tried to walk the line- because you can't go through cancer or any difficult experience without it becoming part of you- especially when it is a constant shadow- like in our family.  You know and often feel a connection quickly with the people who have had really hard times, they get it. They can relate on a level others don't. Over the past few months- I've pulled away from Facebook. It is a huge part of my "work" and support, but so much of the other stuff gets old. The constant- look what I'm eating, here's the awesome that is my life, my life is really really hard but look how well I'm handling it....posts. And then those who share the really hard days- some days I'd like to have those days at 100 fold and it would be easier than my day. I know that many times I am no better.  I don't like that feeling. I don't like feeling bitter.  A week with Row was what I needed.

Now sometimes you need to wallow in the depth of your situation and sometimes you need to lift yourself out of it. Just about everything that could go wrong on Row's travel plans did. Plane delays, lost wheelchair, earthquakes, broken luggage- no pineapples at the pineapple plantation...yet her laugh is contagious and we carried on. I constantly ask- how- how do you keep so happy and laugh it off? It's a choice. We always have a choice and we can choose to laugh it off or be angry and the result is either laughter or anger- how do you want to live?
Where pineapples SHOULD be....

My inaccessible house- although challenging- was navigated with skill.  I love that my children got to know this incredible lady. Each one of them got to pick a day to take off school to spend with her. Lily and Bella chose the mini island tour- pineapple plantation, waimea falls and Polynesian cultural center. Phillip and Kiera participated in Row's surfing lesson. Yeah- surfing. You heard that right.
George the Monkey and Bob the Policeman. 

Our mini island trip meant packing the car full of stuffed friends. Like George. Why? because Row said it was ok and it's fun. It was. She was right. It was a great memory for us. One of many that day.

It was a struggle for me to not help push Row's wheelchair- I started trying to think of it as an extension of her space and would I grab someone and push them up a hill? my kids maybe... but generally that is her space and it should be treated as such. The number of times she was asked if she could get up and walk was pretty annoying- but again you laugh it off. I realized as she passed many somewhat able bodied people in electric wheelchair scooters that there is a reason they ask if she could stand. Americans are an interesting breed.  As we neared the end of the day- we ventured to do the Boat ride at the PCC. It was an experience and it worked out. And that is how it goes- sometimes things work out- boat rides, and sometimes they don't -no pineapples at the pineapple plantation(seriously).

Phil, Phillip and Kiera took the day off to go to the beach with us. After 11 years here- I have never surfed, don't care to surf, please Phil stop asking me if I want to surf. Yet for all those who want to try- he's willing to grab the boards and give you a steady push into a wave and help you do your thing. I have to say- watching them teach Row the basics of surfing was alternately terrifying and amazing. As it has been watching each of the kids learn. I wouldn't expect any less. And in the end it worked out fabulously- the smiles and experience and no I still don't want to surf, but so glad I could share the experience with a good friend. The laughter at dinner, playing board games, making pancakes. The whirlwind of big experiences conjoined with the day to day.

There are things and events in life that change you. Many are out of our control. We can control the way we react. I am a very reactive person. Emotional, passionate. Phil learned years ago to give me a buffer time to react and cool down before trying to have a rational conversation. We are a good balance. Row laughs it off. A lot. Which meant we laughed it off. Why? because you can choose to be angry and spread anger or you roll with the punches and row through the rough waters. Or try surfing them. It's your choice. Laughter seems like a good one. Now where the hell did I put my funny bone?

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)