A Day in the life...

I don't know how many of you have ever had to deal with a serious illness or injury to yourself or a loved one, or had to provide care for someone over an extended period of time. There is not one common experience, but here is a peek at what much of a typical day might look like for us.

Barring any middle of the night excitement, I will usually have a 'trach call' between 4 and 6 am. This is the trach producing so much goop that I can't clear it all the way. The chemo goop is more copious, but also not so clunky, so while sticky and gross and skin burning, it does not totally plug up the tube like the dry clunkers, so less panic inducing. Kelly will get up, pull the canula, put it into soak, suction, clean my neck up, clean the canula back in, and I go back to sleep. Depending on the time, he may also get a little more sleep. If it is later though, he is up for the day. The dog needs to go out, the chickens need to be let out, and it all begins.

He will maybe get a little work done while there is quiet in the house, trying to keep up/catch up/get ahead. He will get Karissa up, make sure she is dressed, hair brushed, teeth brushed and backpack packed and out to the bus by 7:22 am. She needs to know if she rides the bus home, or if someone different is picking her up.

After she leaves, he may get a shower. He may have a meeting, or several, to call into. He may start dinner prep into the crock pot, throw in a load of laundry, or empty the dishwasher. There is always work work and house work and calls to make, appointments to schedule, and the ever present piles of STUFF that seem to appear magically.

Later in the morning he will get me up. He preps my multiple meds. If I am having a good day, I can blend my own breakfast. If not, he'll make it for me. If my hands are acting up, he may even have to syringe it in for me. He'll clear away the multiple cups and medicine measures and wash them out for the next meal, sometime while on a conference call solving problems big and small at work.

If I am up to it, he will walk outside with me to get a bit of fresh air. I am not always steady on my feet and my neck position makes my ability to watch where I go sometimes nearly impossible.

I will be back on the couch, or getting ready for one of the multitude of appointments during the week. I can't get my own clothes from the closet, so he gets them out for me. At least I can still dress  myself. Thankfully Lesley well supplied me with button up shirts which are more manageable than trying to pull something over my head.

Every trek outside the house involves taking the portable suction and the magic backpack. Kelly likens it to Hermione's beaded bag, because just about everything you could imagine needing is in there. He sits in waiting rooms through massage, acupuncture and physical therapy, either pulling out his lap top, or doing as much work on his smart phone (which he didn't want for so long, and now must have to keep our life sorted out). We may stop on the way home to pick up a prescription or some other immediate necessity, but I am often too tired to come in, so I wait in the car and I know he hurries because I am alone.

There is lunch to be made usually when we get home. Likely more meetings, emails, phone calls and faxes. Laundry, dishes, and dinner to plan. Karissa will get home on the bus, tired and cranky. She needs a snack and a mental break before ballet or riding or Hebrew. Maybe there is someone picking her up, maybe we need to take her. She may be so tired and calorie deprived (she isn't a big fan of eating if there is playing to do) that she has a full scale melt down. I can still hug her, or try to calm her down, but sometimes she is just done.

Afternoon meds have to come on schedule or the pain slips away. We are desperately trying to maximize my healthy food intake. To this end, we added juicing to the afternoon med routine. But this adds cleaning the veggies and running them through the juicer, which makes yet another thing to be done and mess to be cleaned up. As an aside, if you are 'drinking' cabbage beet juice, it isn't the tastiest thing in the world. Even just wafting up in your throat...

If not already going, dinner needs to be made. Homework has to be done. Work emails and phone calls never really stop, around the clock. Karissa might need a bath/shower, which is a battle all its own. I may need a shower or bath, which sometimes requires a chaperone, depending on my stability. The trach needs to be pulled and cleaned completely each day as the chemo gooping just coats everything and the last thing I need is an infection in my neck or other issue.

Getting Karissa in bed, asleep, on time, is key. If she is up too late, we all pay, her most of all. Right on behind her bedtime is usually med time for me again. And the dog needs to be fed, the chickens locked up, dinner dishes, and getting me ready for bed. If Karina isn't home, the cat needs to be fed. There is the cat litter he loathes.  He often is up long after I have gone to bed.

We do have help. Karina does considerable Karissa wrangling, helping her pick out clothes, get ready for classes, driving her around, and other things. She is in charge of her cat and changes sheets and does other tasks, but she will be heading back to school next week.

Angie takes Karissa during the week at times, taking on the homework, feeding and some times the showering tasks. There are plenty of others who shuttle Karissa to things, come do chores inside and outside the house, and provide some respite care for Kelly. The housekeeper comes every other week so the key parts of the house get a good scrubbing down.

While much of this goes on around me, I sit on the couch or at the table. I try to help with homework, sort through little piles as I am able, or at least try not to be too high maintenance. I have had to finally accept that I sometimes need to say, "I need..." or "Please do/don't" etc. rather than feeling bad for asking for what I need. For me, this has been a huge step.

Today is PT and then chemo at 2:45. I am a bit nervous as I have been so fatigued that I worry my numbers will be low today. But we will hope for the best and focus on total remission. To look forward to less arduous days, and many of them, together.

Thank you to all of you who continue to stand by us. You do make a difference!

Until tomorrow,

Love,
Kiara

PS-- If any of my Eugene friends have some magazines you would be pitching in the recycling anyway, I am looking for a few for a simple project to do with Karissa. Specifically pictures of pandas/puppies/kittens, gymnastics or dance, or anything NASCAR or football. PLEASE do not go in search of, just if you happen to have them, that would be great. Thanks!