Going the distance

Oh, the fatigue. I think "they" had mentioned it. They being the assortment of professionals and peeps with experience. Nausea is under control but the fatigue is unrelenting. I was stayed in bed until 5 yesterday. Up for dinner and a visit with a friend. Who we had to shoo out the door so I could retreat back to the Jelly Lounge. The new Jelly Lounge is the third floor oasis/bedroom with aforementioned tv. The old Jelly Lounge was the name of the (Jim-Kelly) engagement party friends and family hosted for us - in friend's awesome party room with the balcony overlooking the Chinatown arch - in 2008. Today, the fatigue continued. A meeting at school to talk about Miles, these boys and life. Collapsed at home, followed by work then a social call. I can only hope the energy is back this weekend before two days without childcare... Back to today. Talk about going the distance. A girlfriend from forever flew in from Boston to cover a play date slot on the "what friends do" site. I was too greedy of course and insisted she spend the time with me too. Four boys between 3 1/2 and 6 months. For them it was a wild, trucks, cars, zany, hockey-wrestle-rrific, giggle and goo-goo-ga-ga filled afternoon. They will sleep well tonight. Apparently, the ladies didn't do as good of a job. Miles pointed out that the mommies didn't talk. When I corrected him - we talked nonstop- he clarified. No, no, you never laughed. Well just go ahead and add guilt to the mix. In my defense, it is hard to be so damn fatigued, catching up on how your life is transformed in every way you never wanted it to be, and also have a good laugh or two. Maybe tomorrow. What else? Mom and Rick leave for February in Florida... Soon. When she gets over the nerves about leaving Jim and me to our own devices. I think we will manage but just in case I've spoken for all of you and said you will help with the week of February 11. See, Mom, it is okay. You can go. They've got us covered. A couple of other notes. We heard bad news about a friend tonight so although it is a big Friday night, Jim is sad and retired to the Jelly Lounge. He reports he has nothing nice to say. I'll note that the cat blog got a lot of rave and nervous (as in don't let her turn you into a cat man) comments. I'll post the pictures of him cuddled with the cat formerly known as Leo soon:). It is 9pm all the boys are still awake, and two are weary and weepy. Forget the distance, time to call it a day.

Camp Wocka Wocka

Monday was date night. Jim and I went out for an early dinner at Indique. We order take out enough from Indique that dining in felt like catching up with old friends. Treatment Tuesday. A visit with the Good Doctor who is pleased with the progress (shrinking). Then an appointment with the genetic counselor. Ahh, teaching hospitals. I had a student practitioner. She needed more practice. And I would have preferred she didn't gain it with me. These was an important and sensitive discussion - my risk for related or other cancers; my boys' risks for hereditary and childhood cancers - and they were not particularly well handled. I was not the easiest customer. A few "what are you talking about?" and "this seems like a bad sales pitch -why are you trying to hand me some pharmaceutical lab brochure?" later, we got it sorted out. And I spit in a bunch of tubes. Genetic testing is a breeze compared to the diagnostic testing. Then to infusion. Such a nice word for a toxic injection. Infusion is a step to get through. It is slow. There is a lot to see that could scare you. It is not a lovely space. But the nurses are and where else would we rather be. On to the interpersonal notes - Jim (who as I've mentioned always turned his homework on-time and didnt skip class) got an A on Tuesday. He brought our newest addiction (we quit Downton when it decided violence against women was a good Sunday night plot twist) Orange is the New Black. I was in a room with a bed instead of a chair and we sat in the bed together, watched our Orange, ate snacks, and welcomed the toxic drip. Camp wocka, wocka baby. When the nurses passing in the hall saw Jim snuggled in it was all puppy dog eyes. Miles is happily back into a full week of school after a week of holidays and snow days. Ian had his six month appointment - he is thriving. Born into the 10th percentile, he is now bursting through the 50 to 90th. I am fine. I worked from home this morning. I am fatigued and not feeling super. Tonight will be early to bed. Probably not early to rise tomorrow. But so far, chemo malaise but not eclipse.

Into the new normal

This was a mixed week. It was great to get back into the office and I was busy. Some days were easy to get out the door and feel like myself. Some not. Friday was tough mentally. Saturday was tough physically. Focusing on the physical, I wasn't prepared for the pain associated with hair loss. After several days of physical discomfort - best described as each hair shaft feeling like a splinter in the skin when anything grazed against the grain - I finally dug around online and learned that this was a common side effect. After a 1 blade and a lot of cooling lotion, I am much more comfortable and more fully GI Kelly. A funny note about that - last night Miles told me he wished his hair was long like mine. Hmmm. When I asked why he said he wanted to look like me. I reassured him he did and left it at that. It takes some work to convince myself that this is what recovery looks like. Mostly, I think it is time for me to just keep my head down and keep moving forward. I'm not a runner but this must be what marathon training is like. Lots of one foot in front of the other. And so on. We are having a "normal" weekend. Jim took Miles to the Monster Jam show at Verizon Center. So normal. I went to a movie with a girlfriend. Nice to find some time in the schedule. Ian is back. Coos. Big belly laughs. The wide-open mouth face-plant all moms generously interpret as a kiss. The new normal isn't bad it just hard to believe it is ours.

Hard to be Jim

Things change quickly around here and it might be hard to be Jim. 

First the angry day.

It was Monday and it was to be a day date.  The plan was to take a walk on the Mall and go to the National Gallery.  A little exercise and art to help keep everything in perspective and a trial run as the wigged me. 

The (my) winds changed and so did the plan.  Downgraded from Mall to mall.  Jim handled it with a fair amount of grace given what he had on his hands which was an all of the sudden very angry Kelly.

The trial run was a mess.  The saint at the hair salon/wig shop had a much softer touch with a wig than I do.  When I put it on, it geniuinely looked like a bad SNL skit and it just sucks.  It sucks to not feel like you can put yourself together.  Anyway, I was angry and took it all out on Jim. 

After I spent the first two hours of my day date ruining my day date, Jim helped me turn it around.  We got out of the house.  We puttered around Nordstorms.  And Jim put his good taste and good eye to work  and we engaged in a healthy amount of retail therapy.  Thank you, Jim. 

We ended the afternoon with a late lunch, early dinner and hunkered down for a favorite of mine - snow day watch. 

Today was a snow day - how could it not be good?  Dani watched the boys.  Jim and I worked from home.  Jim resisted his strong need to make me healthy winners like kale smoothies and delivered chemo-winners like mashed potatoes, chilequiles and hot ham and cheese sandwiches. 

People, I do a lot of eating.  Sure, the hair is gone, but so are the cheekbones.  I've been promised on good authority that there will be a reckoning (hair returns, weight goes).  That is something to look forward to. 

I feel like I should note for your sake - don't fret where I am.  By the time you've read it, I'm through it.  I got an email today about the 3 blade and hair loss.  Maybe its the process, maybe its the steriods, I race through these experiences and my emotions and then I am spent and they are gone. 

So, I'm not sure this will translate, but a funny note about Jim's kindness for the cat lovers (which he is decidedly not).  I was hungry at lunchtime today and Jim was working and wanted me to fend for myself.  Rather than fend for myself, I just explained to Jim that my plan was to walk downstairs and pace and cauterwaul in the kitchen until he finally came and fed me.   Poor man.  But he does make a lovely lunch. 

Exhale, Shed the Past

Brutal.  Just telling you how it was. 

Last February, the day after they appeared on The Grammys and won best album of the year, Jim and I had tickets to the Mumford and Sons show at the Patriot Center.  I was about three months pregnant, low energy and nauseaous all the time (hmmm).  It required a rush hour drive from downtown to Fairfax in a snowy, icy crush of traffic.  We talked about bailing the whole drive out. 

It turned out to be this incredible not to be missed show.  Their energy was hugely high, and coming off the Grammys, it seemed as if the band was too hot, too big for the venue.  It felt like we lucked into an intimate 930 club showing of a big venue band and we also knew all the lyrics. 

So, yesterday was the day.  Too much hair left on the pillow.  Too worried about the wind whisking it away and leaving me with patches (seriously).  Too easy to pull tufts of hair out. All bleak and, indulgently, self-pitying, but true. 

The day itself didn't really register.  I think it was a nice day.  Ian was charming.  Mom helped some with the boys in the afternoon so Jim and I could slip out for a long, chilly walk. After we returned, she stayed and watched the boys so Jim could get a real work-out in and I could hibernate a bit.  We got out of the house afterword and had dinner with friends. 

And after a day I don't really remember, we had a night I'll never forget. 

The shave wasn't so bad.  That was really just the technical part. 

It is just that with two people working so hard to keep it together and do something so unpleasant, I guess it is impossible to be strong enough to also support each other through it.  I think the boys in the band got it about right with the following: 

And it was your heart on the line
I really fucked it up this time
Didn't I, my dear?

Last night and this morning I thought these lines perfectly captured my sense of disappointment in Jim.  Probably, with a little more time, it will describe our mutual inability to comfort each other in a moment in our lives during which there was very little comfort to be had. 

Anyway, we were at least smart enough to put ourselves to bed and not muck around in our disappointment too much. 

And what was brutal last night is only slightly rotten today. 

Miles had zero remarks on the change from a pixie to a 3 blade.  He approved one of the wigs this morning.  How do you like?  Looks good.  Perfect, or good?  Good, I don't like how you pulled that one part (of the wig) back.  This would be Jim's three year old. 

And winner, winner, chicken dinner, we found Ian's sweet spot.  Mom and Food.  A bowl of rice cereal served by his mom in a wig.  He couldn't stop giggling, cooing and shrieking. Happy baby. 

And like good yogis, Jim and I are exhaling and shedding the past. 

Tuesday, Wednesday, Thursday, Friday

They just sort of blend into each other.

Um, I'm better-ish today?  I have more appetite and a smidge more energy.  I'm feeling a little less glum.  Could be something to do with the "goodbye, sweet mommy" I got from Miles on his way out the door this morning. 

I had spent some time wondering last week how the mindgame would shift and I think I am starting to see a shift already.  My exuberance, my "I can do it" is morphing into oh the drudgery of it.  Oh the drudgery of all these cycles of ups and downs.  Of feeling housebound.  Of noticing the days getting longer and not having the energy to enjoy it.  And it is only January 17. 

I need to get back to work on my positivity. 

For example, the food that you are delivering, delicious.  Just one little example of how good this food is.  I've known Jim know for almost nine years.  This is an understatement:  left-overs aren't his thing.  He has never packed a lunch in the time I've known him.  And yet, after dinner last night, Jim proudly told me he was taking left-overs in for lunch.  He followed through and then he came home tonight and finished all the left-overs for dinner.  I don't know this man.  I'd flatter you about how much better cooks you are than I am, except, of course, I don't cook and I've got to respect the home team. 

I've asked Jim if there is anything else to update on the blog:  not really. 

Hunkered down, eating rice

Well, it isn't a total chemo eclipse, but it isn't all rainbows and puppy dogs either. 

I got behind on my nausea meds last night and today, I'm back to potatoes, white rice and scrambled eggs.  I'm pretty bummed about it.

The hair is threatening.  I'm pretty bummed about that, too.

A friend brought over clippers today.  Jim is worried about screwing it up.  That's sortof funny given the destination.  I think he means hurting me.  I'd assume that even an a clipper novice won't leave permanent marks. 

Boys are good.  Ian is softening toward me.  Miles is in heaven with a three-day in a row sleep-over with Mimi.  Mom's going home tomorrow night and Dani has the weekend off.  I'll be trying to convert a Wayne's World looking wig into something pasable.  Looks to be a rough weekend. 

Jim asks what can we do to make it successful.  Nothing comes quickly to mind.