Life AT . . .after treatment . . .

Hey all--

Sorry it has been awhile since I posted but it has been a strange 10 days.  First the pure euphoria of finishing treatment.  Then . . . the complete let down of finishing treatment . . . . They warned me, but it caught me by surprise.  After 3 months of daily doctor visits, labs drawn,  a dietician monitoring my weight on a daily basis, nurses fussing over me and asking about side effects, and no less than  6 physicians keeping track of everything from dizziness and bowel movements to the texture of my skin . . . suddenly . . .  nothing. 

"You did great . Thanks for playing. See you in October when we will let you know if you're cured . . . or not."  

Very disconcerting. Especially because it feels like I'm not doing anything, not fighting, just waiting. . . . and you know how I love to wait. 

It's going to be a long 6 weeks.

In the meantime, the side effects  suck. Throwing up almost daily, gagging a lot more often than that, napping during the day and sleeping only with pharmaceutical help at night, no taste and no appetite, lost 11 pounds in 2 weeks and ah, the mucous, the ever @$&% present mucous. 

So . . . for those of you who thought I was doing great and loved my positive attitude, etc etc etc. sorry, but this bites.  Now is when all the doubts set in.  You see, I'm not done with cancer, I'm just done with treatment and I DON'T KNOW what happens next and I DON'T have any control over it! AHHHHGH!

Ok, Ok . . . I'm not really going off the deep end. Apparently this little "post-treatment depression" is very normal. . .  and I've done all the right things about it . . .  like noting it, and talking to people about it, and writing about it here,  and now I just have to deal with it.  

Besides, I'm not really depressed. I'm pissed. And I'm tired. And I don't feel well. And I'm tired of being tired and not feeling well.  And it's all normal.  And I don't want to be normal. Frankly, I prefer to be extraordinary. I'm working on it. 

And . . . I do still have a lot of things to be thankful for.  And I do still note them:

I was well enough to take Charlie to his first day of 3rd grade!

I have several  good hours every day where I can talk to friends, decorate, or get my nails done.

My side effects are not nearly as severe as they warned me they might be.

There is lots of time for reading.

I still have the most amazing husband ever. . .

 . . . and kid, and family, and friends, and neighbors! 

It is probably cured.

I can still swallow and TALK. (like I wasn't going to be able to talk-hah!)

So, that's it for today.  I am mostly well and getting better all the time. Thanks for checking in on me! I promise a more upbeat post next time . . .so long as the mucous will cooperate. 

  

    

No need for sheep . . .

The word "BLESSINGS" is the first thing I see when I walk downstairs every morning. It is prominently displayed above the range hood in my kitchen and at perfect "eye level" when I hit the 4th step from the bottom.  I put it there on purpose because of the lyrics to one of my favorite songs. They go like this:

When I’m worried and I can’t sleep
I count my blessing instead of sheep
And I fall asleep, counting my blessings

When my bankroll is gettin’ small
I think of when I had none at all
And I fall asleep, counting my blessings

I think about a nursery
And I picture curly heads
And one by one I count them
As they slumber in their beds

If you’re worried and you can’t sleep
Just count your blessings instead of sheep
And you’ll fall asleep counting your blessings.

So if you’re worried and you can’t sleep
Just count your blessings instead of sheep
And you’ll fall asleep counting your blessings.

The music and lyrics were written by Irving Berlin for one of my all time favorite movies, White Christmas. In the 1954 movie it was sung by Bing Crosby and Rosemary Clooney and they both recorded it later (as did several other folks including Eddie Fischer and recently, Diana Krall) but it is still the movie version that is my favorite. 

I use the lyrics as a sort of mantra when something is worrying me . . . or . . . when everything is wonderful. So much so, that a few months ago (before I was sick) Charlie asked me about the tune that I was humming.  I explained that I was worried about something and that it helped me to remember to get "unworried." The next time he heard me humming it under my breath, he ran up and gave me a hug! "Don't worry Mom!" he said. "Oh," I said, "I wasn't worried, just happy." "But you were singing the worry song."  "Oh yeah, I was . . . but most of the time its a blessings song."  "Hmmm," he said "I don't get it." I tried to explain that turning worries into blessings is what the song is all about, but I think the concept was still a little beyond him . . .

They play music every day in the radiation room. I never know who has chosen the station/CD, and I never know why. Funny, but I've never asked. I sort of like the surprise.  I've had big band classics, Sinatra, Michael Jackson, and Madonna (twice!) but usually its a random easy listening station. I can usually get in about 4 songs while I'm on the table, but I never hear the first one. Because I always start with my song, my blessings song, in my head. 

Tomorrow, Wednesday the 19th of August, I will do that for the last time.  In itself, that is a remarkable blessing. The side effects have gotten particularly crappy this week and I am told that they are likely to significantly worsen before they get better, but what a blessing that they did not start sooner! (See how it works!?) I get calories almost exclusively via liquids or the tube, (which makes dinner prep really easy). I have no hair on the back of my head (still covered by the hair at the top though). The skin on my shoulders, back, and neck is red, itchy, scaly and horrible looking (but it too, is covered by my hair). I have no sense of taste to speak of (but someday in the next few months I will get to try everything I have ever eaten in the past, as if for the first time). I got cancer at age 44 (I got to find out how many people love me). We may not have cured it, it might come back (what a great reminder to live every day to its fullest). After tomorrow, no more daily trips to Charlotte. (think of the gas $ I will save) Very few appointments at all. (More time for home decorating!) Just feel super awful for a few weeks and come back for a scan the first week in October. (I get to be home every day when Charlie gets off the bus)  Etc. Etc. Etc. The worry into blessing transformation works for almost everything (ok, ok, except the damn mucous. I still CAN NOT find a blessing in that, it's just GROSS)

Until tomorrow, forget about the sheep. Try this:

 http://www.tsrocks.com/b/bing_crosby_texts/count_your_blessings.html  

The chair is empty...

Woo hoo! No more chemo and here is my empty chair to prove it! Feel pretty good today. Tired of course but I will get some rest tomorrow and then 8 more days of radiation and DONE!!!!!!!!!!! 

Mucous is GROSS!  Not tasting sucks! I pine for red wine, red meat and salty potato chips . . .by Christmas maybe?!?!?

  

For today, my three things to be thankful for are:

1) kids who invent their own cool games 

2) Jenn, Charlie's "bonus" mom who is always willing to welcome him into her household at a moment's notice and 

3) having an anal husband--even the smallest details never fall through the cracks

Love your emails, thanks for sending them, I will try to answer soon. Have a great weekend.

No stale snacks . . .and other things to be thankful for!

For years, I have sporadically kept a "gratitude journal". Blank pages of a pretty little book filled each day with 3 things for which I am thankful. Usually not 3 "BIG" things, but 3 uncommon things, 3 little things that force me to note, just for a moment, that the thing . . . that could have gone wrong . . .didn't. Or, when something is annoying, irritating or wrecking my schedule . . .a bit of gratitude that it isn't worse (ie: when running late and then being forced to wait behind the barrier for the train to pass, there might be a jounal entry that reads: I did not get hit by the train!) In thumbing through the journal recently, I found other entries like: "the funeral procession I passed was not for somone I know" . . . "the glass I dropped in the sink did not break" . . . "ten perfect fingernails" . . . "the sound of Charlie's laughter" . . . "perfect paint colors" . . . "the maid came today" . . . "Suzy" . . . "the very sound advice of my friend Pat"

Many of these, based on the date, and what was happening in my life at the time, I can actually remember writing. The book holds these musings for the last 15 years or so, a few weeks at a time of daily entries and then months with nothing, another few weeks and then, a drought of almost a year . . .I was inspired though, to pick it back up this week because of two specific things for which I am particularly grateful: 1) I do not have a layered haircut and 2) I never have to worry about stale snacks.

The first is easy to explain. I mentioned in an earlier post that all the hair at the bottom half of the back of my head is falling out because it is where the radiation leaves my body ---with a layered cut, I would be VERY strange looking indeed, but, because my hair is all one length, you can't even tell--the long stuff from the top covers up the bald stuff on the bottom--so far!

And, I have to tell you that never having to worry about stale snacks is particularly gratifying! Charlie shared this with me earlier in the week when we were talking about my feeding tube. He said, "Mom, you know what's cool about that tube? If you ever want a snack you can just pour something down it wherever you are . . . in the car even! Do you know what this means, Mom?" "Um . . . what Char?" "You NEVER have to worry about stale snacks!"

Wow! How cool is that? Of course he can eat snacks in the car too and I have NO idea why he is worried about stale ones, but it's something to be grateful for, none the less. (two days later Jason pulled a ziplock bag of goldfish crackers (almost goldfish dust) out of his camp bag . . .can't say how long it had been in there but it might explain his concern!)

Anyway . . . I am back on the gratitude journal again and my three entries for today are:

1) SINGLE DIGITS! Only 9 more radiation treatments to go!
2) My sister's long and convoluted stories (Lord, she makes me laugh!)
3) In the cancer arena, my journey is only a skirmish . . . 32 days of treatment . . .likely not months and years of battling---one crappy summer traded for a real chance of cure.

I am unbelievably blessed . . .and grateful.

The beginning of the end . . . .

Hello all--

Today, August 3rd, is the first day of my last week of chemo!! --the beginning of week 5 of treatment. Week 4 went well and while my side effects definitely increased (more mucous, increased gag reflex and other equally charming things) they were still not nearly as bad as I had anticipated.  All my doctors are thrilled at how well I am doing and at how well I am tolerating the therapies.  My sister, Mariea is in town to be my chemo partner through Wednesday and then Jason will do the last 2 days with me on Thursday and Friday.  Much to my dismay, radiation is cancelled on Friday because they are doing a software upgrade to the laser . . . so my graduation day has been postponed to Wednesday August 19th.  21 down and 11 to go--two thirds of the way through!  

For anyone bringing food, you can definitely cut down on the quantities now!  I am still able to swallow but mostly, liquids, or soft, REALLY bland foods with no seasonings.  (not the yummy flavorful things you've been making for me!) Thanks so much though for taking care of my boys! It is really appreciated (and after being in treatment with me from 7-5, my sister appreciates not having to cook!)!  It is so humbling to have such remarkable friends and neighbors.  You guys rock!  

That's all for today . . .if I get a chance to write tomorrow I will tell you all about stale snacks and layered haircuts and why I am grateful that I don't have to worry about either! Thanks for checking in on me. Have a blessed day.