Anger, Accolades and Admissions

My friend Nancy has been home caring for her parents for almost a decade. They both suffer from memory related issues, as well as a host of other health problems. Her parents are "older" and she was an only child. She does not have close cousins, a partner, or children to help her. When her mother's wandering antics finally became too dangerous, she was forced to put her into a facility to keep her safe. All this time, though, her dad has been at home. She tried a bit of respite care and they LOST him, yes, as in couldn't find him.

This morning I saw there was a text from her late last night. Her father passed away in the hospital. Yes, of course this is not a huge shock given the situation. However, for her, her world collapsed. And I am angry. Not because her father died. I loved her father and know that he lived a great life. It was his time. However, I want to help her. I want to hold her hand at the funeral home. I want to search for words to explain this to her mother, again and again. I want her to lean on me. But I am in no shape.

Just as I was in no shape when Lora's brother passed after all the stem cell transplant and the rest they endured. I could not help. I could not even attend the funeral.

In my life, so many people have helped me. Asked why I was crying on the bus. Showed me how to buy books and pay for classes. Offered to take me along to Colorado. Drove the dreaded paper route with a finger in a sling. Protected me from my own stupidity more than once. Done a thousand kindnesses through my surgeries and treatments. My tab is long my friends.

And I am angry that cancer is keeping me from paying my share. Not just that, but causing me to ask for more and more. Angry that I am not the giver of help, but instead the receiver. Again.

Of course I am angry about other aspects of cancer. The things it has taken from my family. I have no recollection of Karina's Bat Mitzvah or a week at the beach, even when I look at pictures. My husband and children have had to adapt time and again to my new special needs. Karina's friends are enjoying a carefree freshman year. She is worrying about me. Again.

I have to balance the anger with thankfulness. Today there is so much to commend. It would be wrong for me not to put Kelly at the top of this list. He has cared for me 24/7 while juggling work and the children, house, pets, and all other responsibilities. Since the trach went in, I don't know that he has left my side other than a few hours at night when I was in the hospital. He stays up long after I do trying to catch up, wakes each time I struggle in the night, and then is up again before me desperately trying to keep up. He constantly tells me how beautiful I am even though I look like someone put an air hose in my mouth and wandered away. The adoration is still there, but now it is tinged with fear.

Karina and Karissa are trying to cope. These are not good ages for a life crises. I don't know if there are good ages for one. Karina tries to help, and will do anything I ask. I do have to ask though, because she is so bound up in her fear and grief right now that she has a hard time looking around. Karissa seems like herself, but the endless eating is a tip off that she is stressed. While she needs the calories, as she is as active as ever, it is frightening to recognize she is desperately trying to self-medicate for the fear she senses.

We started the morning with wonderful Sara Stalcup at I Run With Scissors. I first met Sara when my hair was so long that I wanted to donate it. I knew the new short do would be a new lease on life. Little did I know how many times she would be giving me a haircut with a purpose. I don't have to bring a picture or describe some celebrity. I tell her my needs and she does it. Typically blazingly fast. Today took longer as trimming my hair very short took time. It is very short, but still looks like a style, has a few options until it falls out, and is concentrated over the ugly mole on my head. Have I mentioned bald won't be beautiful for me?

I also had physical therapy this morning. Karen is amazing. She took a few short looks at me and got me on the table. She spent over an hour working on draining my head. This is no small task considering the scar tissue and the fact that my neck is off limits, as is half my chest. Still she got things moving. I couldn't even open my left eye this morning and at one point it was larger than a golf ball. Tonight it is almost normal and Kelly had to tighten the trach collar. Thank you, Karen!

This afternoon, another Karen came to see me. She is Karissa's speech teacher and has become a dear friend. She has worked hard to help me each step of the way and revised her plans with each new challenge. She is trying to make the Dynavox be more user friendly. Changing the settings is so complicated and there is no manual. There are videos you can watch, but then how do you change the settings while you are watching the videos? It is surprising how hard something is that is supposed to make your life easier.

Karen's visit also lifted my spirits because it made me feel normal. I know I look frightful. I can't talk. Sometimes I drool. Worse, sometimes yucky stuff flies out of my trach. I am the whole package. The chance to talk about parenting, or school or asbestos abatement is comforting.

We haven't figured out next week yet. So much of it hinges on how I feel during treatment Monday/Tuesday/Wednesday. We've recruited Eileen's kids to do some yard clean up. Primarily cutting back what froze this winter. Who knows what will get planted this year. We'll see. There have been so many offers to help that sometimes it is hard to remember who offered what.

I have a few confessions to make. When I saw a person with a drooling issue, he/she often had some kind of kerchief tied around his/her neck. I always wondered why. Doesn't this call attention to the drooling? Who would want that wet cloth hanging around their neck? Me. That's who. You get sick of your shirt being wet all the time. You get sick of searching your pockets/purse/surroundings for the cloth you just had as the drool starts. Trying to find the driest corner to use this time is worse that wearing a kerchief. My apologies.

I have been cocky. I have stated right out on this blog that yes I need help, but no I wouldn't ask for it. Meal trains have been saving us for weeks. The first of the outside helpers arrives on the 3rd. But still, we are struggling. Kelly cannot leave me alone, so all errands fall to Karina. Fine until she arrives in Corvallis on Sunday. My level of household help is changing the toilet paper roll when it runs out. That is pretty much what I have stamina for. The laundry never stops going. Any time spent doing one chore is stolen from something else. I am not sure what is going to happen if I need more care, and Karissa has school work that needs doing, and and and. I will eat my words. We need help. I don't know if it means a driver, a housekeeper, or a home health care nurse. Frankly I can't think beyond ten minutes from now.  If there is something you think would be helpful, it will be. I am very much afraid about months of treatment for more reasons than feeling like crap.

Oh, be thankful for your nose. Even if it gives you sinus problems and congestion. Breathing through your neck means no smells. It means no way to blow your nose. And, if you think boogers are gross, try hacking them unfiltered straight out of your lungs.

I know this hasn't been one of my more lighthearted posts. I'm sorry. I have plenty of jokes about the villagers and torches, if you'd like. Trying to beat back the fear and keep the optimism maximized.

Until tomorrow...

PS--Anji, thank you for the Scarcasim card. I love it. I may need to have it made into a customized hospital gown... Love you my friend!