Top Ten Things People Talk About at the House of Chemo

in no particular order...

1. How many sessions of chemo have you had?
2. Are you doing radiation?
3. Have you lost your hair?
4. Diarrhea or constipation?  
5. What's your diagnosis?
6. What's your chemo regimen?
7. Do you hate these new needles, or what? (The FDA just recalled our old ones - to make them safer for our healthcare providers) We all hate them, nurses and patients together.  It feels like they're pushing a dull stick into your port.  
8. What surgeries/procedures have you had lately?
9. It's freezing in here.  (It has to be cold in the room where they mix our chemo, so it's pretty much cold everywhere.  They have lots of blankets at the House of Chemo)
10. How are your family/friends handling this?  How are you handling how your family/friends are handling this? (We do not talk about this in front of the rest of you. Cancer takes you to a place that no one else can follow.  Unfortunately.)  
11. How come these magazines are from 2004?  (okay, that was eleven things)

Does this sound sad?  It's not, really.  Not most of the time.  You would be surprised at how much we laugh at the House.   We laugh about this being one of the only places on earth where you will discuss your bowel health with people you have never met before and not even think twice about it.  We laugh because anywhere else it would be rude to ask someone if they'd lost their hair, but here it's routine.  You make instant friends here, and you are delighted for them when they finish their final treatment.  They will come back and look for you when they have their blood checked, and you'll hug and kiss like long lost friends.  You'll talk with people you never would have looked at twice before.  Cancer is a bonding experience, and a great leveler of the playing field.  It knows no color, no socio-economic status.  It gets the pretty people and the not-so-pretty people; the young and the old.  It brings us together in ways we never could have imagined.  I thank God for the people I have met here; for what they have shared with me and for the prayers we exchange for one another.  For giving me opportunities on a regular basis to help someone who is having a harder time than I am.  For allowing me to open a door for someone, or to tell a first-timer that there's nothing to be afraid of when they sit down in that chemo chair; that it will be okay.  That we're all here to support one another.  That they are not alone.    

Is this boring for anyone else, or is it just me?

I know... I haven't done a blog post in a while.  Mostly because my cancer is not all that interesting to me, and I haven't been able to think of anything to write.  I'm mostly just getting on with life.  But... let's recap what has happened since my last post.

My second PET scan "showed significant reduction" in my cancer. Yay! Again... one of those things I should be happier about but can't really seem to work up the enthusiasm.  Yes, I am glad to have the good news.... but no I am not happy to have cancer.  Yes, I am not going to die any time soon unless I get hit by a bus... but no, this is never going away.  It's incurable.  Like a tattoo, I will carry it around with me for the rest of my life.  Unlike a tattoo, it will not sag and look ridiculous.  I guess there's something positive in that.

My epidural worked well... and now it's not working any more. I'll be calling the surgeon to get another one scheduled.  I'm trying to decide if I should do that now, or wait until it gets a little worse.  Talked to my oncologist, Dr. N yesterday, and he thinks we should wait a little bit, but not too long.  I don't want to be incapacitated again, but if I can stretch it out a bit more, I might want to do that.  I'm dragging my right foot again, and the neuropathy seems to be getting a bit worse. I'm going to give it another week and see where we are then.

I can't remember if I told you (chemo brain) that Dr. N reduced my Vincristine dose last time because of the pain from neuropathy.  Well, he did.  He asked me last week what I thought about bumping it back up, and I said we should go for it.   So we did.  (I love that he asks... I feel like I am an active participant in my treatment.) I had the chemo today, so we'll soon see what happens.  That may be a factor in my epidural and how long I wait to schedule it.

This Friday, David and I will go to Greenville to meet with Dr. S, who does stem cell transplants.  The plan is that I will go into remission from this treatment cycle, and then when I relapse again, we may do an autologous stem cell transplant.  That means that they will harvest my stem cells to use.  This will (may) happen at some unknown point in the future.  No one really knows how long my remission will last.  Dr. N says a year to 18 months would be a "good, long remission period" for me.  I'm hoping and praying that it's longer, but only God really knows.  It's hard to pray for God's will when you want him to cure you, but that's what I am doing.  I have to trust that He has a plan for me, and it's better than any plan I could come up with on my own.  I think David prays for a miracle.  That would be nice.  As long as it fits in with the plan.

I have been blessed.  I still have my hair, and according to Crickett, who is my sweet, sweet friend and stylist, it is not coming out.  So, I will invest in some hair color.  And then if it falls out, I'm gonna make her glue it back on.

I have also not been sick even once.  I have thought I might have felt it coming on a couple of times, but I popped one of the anti-nausea pills they gave me, and I felt fine.  I might pop one when I finish this post.  It's either chemo related nausea, or too many chicken wings.

That's the other thing.  I was looking forward to being slightly gaunt from chemo.  You know, just gaunt enough that people would say "You know, you could stand to gain a few pounds."  Not "Oh my gosh, are you SICK?"  Chemo chic, I call it.  Well, it's not happening.  Instead, I am now taking THREE drugs that increase my appetite or cause weight gain.  I have rolled right off of the Weight Watchers wagon and begun cramming food into my mouth with wild abandon.  (Hold on, let me unbutton my jeans..... ahhh... better!)

So... this Friday I am going to bite the bullet, march into Weight Watchers, lumber onto the scale and find out what the damage is.  Then, I am going to start tracking my points and start eating like a reasonable adult instead of a child locked into a candy store overnight.  I hope.

Focused prayer for:

• no side effects from the increased dose of Vincristine
• willpower to stick to WW
• better results from the next epidural
• my next blog post to be more entertaining (we could all use that)

Off to see the Wizard...

Today I should get the results of Saturday's PET scan when I go for chemo.  Please be in prayer that the chemo is working. 

A Quick One Before I Go

I'm off to the hospital this morning to get a lumbar epidural.  I had an MRI just before New Years and found that I have two herniated discs - one pretty bad, the other not so bad.  That, in addition to the neuropathy caused by the chemo medication, is rendering me pretty much useless lately.

We bought some bar stools that I am now using in the kitchen, since I can't stand for any length of time.  They've been a huge help.  I'm taking Lyrica and Percocet for the pain, and am hoping to get off of both once I get the epidural done.  It's just a temporary fix, but can be done again when needed.

Had a second PET scan on Saturday.  I should get the results of that when I go for chemo tomorrow.  We'll see how treatment is progressing then.

In other news - David changed my blog layout, so leaving comments should be MUCH easier now - give it a try!

My day so far...

Go to oncology office and sign in.

Get called to front desk and told I do not have an appt because I cancelled it.

No I didn't.

Yes you did.

No - I didn't - I need to have my bloodwork done.

You had that done last week.

I know.  I have it done EVERY week.

Oh, okay.  Have a seat and we will work you in.

 

Get into room to have blood drawn and sit down.

Realize I sat in doc's chair instead of patient's chair.

Burst into tears for no reason. 

Switch chairs.

Continue to cry after nurse comes back and while she draws blood.  No idea why.

Continue to cry as nurse leaves to run my blood.

Still crying as doctor comes in.  He puts his arm around me and pats my shoulder.

"We'll blame it on the chemo" he says.  Okay.

 

Go to orthopedic surgeon's office.

He has not seen me in 10 years, so I fill out new paperwork.

See surgeon.  I have no reflexes due to chemo.  Weird, but he says that's normal.

He says he does not want to do surgery; thinks I will do better with a cortisone injection in the spine.  They will call me to schedule.  I ask if I can have something for the pain until I get the injection.  He says "Sure - what do you want?"

Tell him I do not care as long as it makes the pain go away.

He writes Rx for Vicodin.  I should have told him I've always wanted a sports car.

 

Go to Target.  Turn in Rx and wander the store.  Find cute lamp for kitchen.  Find a smaller lamp for kitchen.  Even cheaper.  Might be too small.  Not sure.  Get paged to pharmacy.  Return to pharmacy.  Doctor dated Rx for 1/12/12.  They cannot change it because the prescription is for a controlled substance. Purchase small lamp and leave.

 

Go back to surgeon's office and wait for new Rx. Carefully scrutinize Rx before leaving. Take it back to Target. Get batteries I forgot the first time.  Pick up all Rx's.  Drive home.  Take printer ink cartridge out of pharmacy bag.  This is not mine - have never seen it before.  They charged my HSA card for it.  Need to take it back.  Not today.  Take Vicodin.  Sit down to read email.

A Christmas Tradition

At our house, it wouldn't be Christmas without Monkey Bread for breakfast.  This year Katherine asked me to share the recipe with Colby's mom.  I told her there's really not a recipe so much as a suggestion.  Here then is the suggestion, complete with photos to guide you (and Colby's mom) along the way.

This is what you will need:

3 cans of buttermilk biscuits (any brand)

1 cup granulated sugar

2 -3 Tbsp. (or more) cinnamon

1 stick butter, melted

1 cup (or more) brown sugar

Put your granulated sugar and cinnamon in a gallon Ziploc bag.  You could use a bowl if you wanted to, but the bag is easy and disposable.

Shake it up well.  We like lots of cinnamon - you can use however much you like.  I love Pampered Chef Korintje Cinnamon, but use whatever you have. Now unroll your biscuits.  These are from Aldi and they work just as well as the name brand ones. If you are Katherine, jump in startled surprise every time you pop a can open.  Cut each biscuit into quarters.  We like to use our Pampered Chef scissors for this.

Drop the biscuit pieces into the bag of cinnamon sugar and give them a good shake, coating each piece thoroughly.  Then, pile all of the pieces into your Bundt pan.  (If you do not have a non-stick pan, you'll want to spray it with Pam first).  When you are through, it should look like this:

I sprinkled some of the leftover cinnamon sugar on top.

Now you're ready to make what my husband likes to call sludge.  Melt a stick of butter (yes, a whole stick) and stir in about a cup of brown sugar.

 I say "about" a cup because I really have never measured it.  You'll want to keep adding and stirring until it looks like this:

Now, spoon your sludge all over the biscuit pieces in the Bundt pan.  It should look like this when you are through:

At this point, you can either bake your monkey bread or cover it with plastic wrap and refrigerate it over night.  That's what we do - it lets us get to the presents faster on Christmas morning.

Bake the bread at whatever temperature is specified on the biscuit can for about 25-30 minutes.  Check the pieces with a fork to be sure that they are cooked through.  (Check one just under the top layer)

Unmold onto a plate to serve, and you will see something like this:

You could easily add nuts to this recipe if you wanted to, but Katherine and David prefer it without, so that's the way we do it.  This bread is delicious with a big cup of coffee or a big glass of cold milk.  The leftovers (if there are any) can be microwaved for 15-20 seconds, and they'll be as good as when they were first baked.

Enjoy!

Cancer is like an ogre....er....onion

It's got layers.  Cancer is huge, and when it gets dropped on you, initially you feel the whole crushing weight of it.    Friends tell me they don't know how I handle it.  Well, the thing is.. you don't handle all of it at once.  You peel off the layers, and you deal with each one as it comes.  Sometimes they make you cry.

The first layer of my onion was the diagnosis and the tests and the surgery.  They all came together in one big thick layer.  I was still reeling from having the whole thing dropped on me and I stumbled through it blindly, feeling my way, putting one foot in front of the other cautiously, trying not to fall off the edge of the earth.

Chemo was one of the next layers. And chemo itself is an onion... lots of layers of it's own.  Side effects - the ones you expected and the ones you had no clue about.  I expected my hair to fall out - something that really hasn't happened to any great extent yet.  Every morning I get into the shower and give it the Dirty Harry treatment - I rough it up and ask it "Do you feel lucky, hair?  Well, do you?  Are you gonna hang on to the scalp for one more day?"  So far, it's proved to be as tough as the rest of me.  We're all hanging in there.

The side effect I didn't expect was the peripheral neuropathy.  Nerve damage.  One of my chemo drugs is causing it.  The side effects?

• pain
• burning
• tingling (or a "pins and needles" feeling)
• muscle shrinkage
• weakness
• balance problems
• trouble with tripping and stumbling while walking
• loss of feeling (numbness)
• decreased or no reflexes
• increased sensitivity to temperature (usually cold) or pressure, so that things hurt more than usual
• constipation
• trouble passing urine
• blood pressure changes
• trouble swallowing 

Nice, huh?  And I'm having... oh, let's see...  all but the last three and the decreased reflexes.  In other words, I'm limping, stumbling, tripping, stiff, in pain and constipated (when I don't have diarrhea).  Medication helps a little, as do the electric zippy carts in the store.  (Plus, they're just so darned much fun to drive!) Today I got back into the gym which helped a little too.

Okay.. so the next layer.  This is the one I peeled off recently.  Length of remission.  Somewhere along the line, David and I both "heard" that a standard remission period for my disease would be 3-5 years. (Non-hodgkins follicular lymphoma is incurable.)  Last week, my oncologist told me that he would consider a "good, long remission" for me to be a year to a year and a half.  Wow.  It took me several days to process that information.  I couldn't even ask anything else after hearing that because it filled my whole consciousness, pushing out every other rational thought I might have had.  The rest of the day kind of passed in a haze, and I spent a fair amount of time reflecting on my own mortality.

Let me say here that I am a Christian.  I have been born again in Christ and am assured of my place in Heaven with my Lord and Savior.  I know without a doubt that this life is not all there is. That said, I am not ready to die.  I am not nearly through with this life, and I intend to fight like a tiger to grab as much time as I possibly can.  So, I tossed that layer aside and went out for coffee with my girlfriends.  Girlfriends and caffeine are gifts from God.  Never doubt that.

The next layer?  We're waiting until after the holidays to peel that one off.  It's going to be a consult with the doctor in Greenville who will one day do my stem cell transplant.  But that's another layer for another day.