Last one?

Yesterday's chemo may have been my last one!  Next week when I see Dr. N, we'll schedule another PET scan and see what we find.  We'd talked about doing two more sessions just to be on the safe side, but we're going to defer any decision making about that until after we see the results of the scan.

I had a chance to talk to Dr. N yesterday.  He is hesitant to do the other two chemo sessions because I'm having so much pain with the neuropathy caused by the Vincristine.  I told him I do NOT want my pain to be a factor in doing or not doing the chemo.  If he feels another two sessions would be beneficial, I want to do them.  He agreed to wait and look at the PET scan results before making any decision.  I love that he is concerned about my pain, but I have my eye on the prize - a longer remission.  I will do whatever it takes to make that happen.  I can push through the pain.  Rashan said I was a warrior.  Maybe I am.

I asked him if the neuropathy would go away after chemo.  He said "probably".  Ahh....  as always, there are no definites when dealing with cancer.  Just "probablys" and "hopefullys".  I'm learning to deal better with this.    I have always been someone who wants to be in control of everything.  I was never comfortable without a definite plan.  I'm the one who wants to know where we are going, when we will get there, what we'll do while we are there and when we will be leaving.  God is using cancer to cure me of this.  To learn to let go of my need to be in control and to lean on Him.  He is the only definite in my life.  He is in control and He wants what is best for me - always.

Speaking of Rashan -  my friend and trainer (back in the day when I was in the gym four days a week - BC - before cancer)  - he stopped by to see me on Sunday.  I apologized for not being in the gym and he told me he understood.  He said he'd be there for me when I was able to get back.  I told him he'd better be - we had an important job to do - get me strong and ready for my relapse and stem cell transplant.  I need to be as healthy and fit as possible when it's time.  Whenever that is.  And then, post-transplant, we'll have to do it all again.  I need to start getting my head back in the game as soon as possible.  Rashan asked me if I was keeping God in my life and I told him that I am.  It would be impossible to get through this without Him.  We shared a good hard hug - there are few things more healing than a hug from a friend.  Thanks, Rashan!

Wow... this is turning into a novel, but bear with me - I think I'm almost done.

I'm dragging today after chemo.  I had to take some of my anti-nausea medicine last night - fortunately it worked.   I'm really tired today and my throat is burning - a new symptom, but I think it's from the chemo.  I will look it up later, but I think the Cytoxan can do that.

David told me to go ahead and send Fred to daycare today - we both need that.  He needs to work off some energy, and I need to have some quiet time where I do NOT have to throw the ball or play blankie or type one-handed with 15 lbs of very warm dog on my lap, or run downstairs every 15 minutes when he blatantly lies to me and says he needs to go out when what he really wants is a carrot.  I love him, but he is a typical two year old, and this mom badly needed a break today.

I'm planning to have coffee tonight with my sisters of the heart, so I'm trying to conserve energy today.  I'm GOING to have coffee even if I have to lay on their laps while I drink it.  And you know what - they'd let me 'cause that's how much they love me.  And I love them right back.  Bunches.

Focused prayer requests:

• energy and relief from pain and nausea
• a good clean PET scan
• that I would stop looking at the kitchen timer to see who is calling when the phone rings :::shaking head::::  forget about that one - I don't think it's likely that will change.

Have a seat!

Yep, have a seat - 'cause I'm going to be sitting too!  I think this last chemo hit harder than the ones before it, or just built on the damage that the others had done.  I find myself really tired, weak and worn out.  I'm sitting down to do pretty much everything now... folding laundry, cooking.  I was sitting on the floor at the library the other day picking out books - there were some good ones down there on the bottom shelves!

My exercise regimen consists of me dragging myself from one room to the next, doing whatever chores I can perform while sitting down (or standing for brief periods of time - like to make the bed) and then resting before I tackle the next chore.  I'm not really able to walk Fred any more; I just don't have the energy.  David and Katherine have been good about doing that, and his dog daycare has been a Godsend - a wonderful place to help him blow off some of that excess energy.  He is learning that if he wants me to play ball now, he has to come and put the ball into my hand so I can throw it.  I think he's a little frustrated that he can't just throw it in my direction any more, but he's being understanding.

I'm not sleeping well lately - I'm having pretty severe pains in my legs at night, and they wake me up about once an hour or so.  The ankle that I broke 10 years ago is hurting now too - throbbing worse than when I broke it.  I think it's the Vincristine attacking the weak and already damaged areas.  I would love to get another epidural, but insurance has denied the last one so we are fighting them on that.  I'm not going to be getting another one until/unless we can get them paid for.  I'm taking the pain meds that the orthopedic surgeon prescribed, and they're helping a little.  I just don't want to keep taking them for the long term.

Thank goodness for Lowe's Foods - I can do my grocery shopping online and have David pick it up on his way home - it's already bagged and waiting for him.  I found a coupon code online and didn't have to pay the fee for the service - a nice savings.

Only three more chemo sessions to go - my next one is tomorrow and Wednesday.  I'll have another PET scan after that, and if all is well, then two more chemo sessions and I am finished!!!

Focused prayer requests:

• clear PET scan
• remission
• relief from pain
• successful appeal of insurance claim for epidural

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.