Monthly Archives: December 2012

What’s Next?

Ever since Dr. P. mentioned the possibility of a break from chemo, my mind has been reeling with, “What next?”

Before chemo, I was in school, working part-time at a copy shop on campus.  Now, knowing that I will eventually be back on chemo, I don’t see the point in going back to school.  I didn’t earn enough money at work to make it worth going back.  Day care is our biggest expense and I can’t earn enough to pay for that.

We’ve been talking a lot about where Little Man is, mentally.  There’s something called “reading readiness” and he is exhibiting all of the signs.  He can point at words as we are reading.  He knows that books are read top to bottom, left to right.  He can name every letter and the sound it makes.  And lately, without us asking, he will look at a word and make the sounds.  (For instance, he will say, “Buh- Aa – Tuh” if he sees the word bat.)

I took enough classes to know what reading readiness is, but not enough to know how to teach reading.  I taught fourth and fifth grade, so my kids were way beyond that point by the time they got to me.  So I’ve been doing a lot of research about how to teach my kid to read.  Apparently there’s a movement out there called “home preschooling”.  A lot of the moms in my local moms group are talking about doing it with their kids.

So after a lot of research and a lot of discussion, we have decided to pull Little Man out of day care.  He will still attend public school in the mornings for his speech therapy, but I will pick him up afterwards and bring him home.  We’re going to give my body a few weeks to recover first, but I think I feel good enough to be able to handle this.  We will be able to put the $152/ week we were paying for day care towards paying off the credit card balances that have accumulated throughout this process, and Little Man will get a lot more one-on-one time.

I’m going to sign him up for a couple of activities around town so he is still able to socialize and we’re going to have a couple hours of “structured” learning time each day.  This also means I have to get my butt in gear and create a schedule and stick to it.  My boy NEEDS a schedule or he falls apart.  He’s been that way since he was an itty bitty baby.

That’s about all I know for now.  I’ll try to keep you posted as I work out more of what the future holds for us.  I’m not sure how much this blog will change now that I’m no longer receiving treatment.  Perhaps I will update with all the normal, everyday stuff or perhaps I will let it be until something cancer-related comes up again.  I guess we’ll just have to wait and see.

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Good News!

I just left the doctor’s office and he said I looked good enough to stop chemo for now!  I’m so excited!

A few clarifications: I am not “in remission” or NED (no evidence of disease).  The doctor said the nodules were small enough that he had to look hard to see them on the scans.  We are also waiting for a final report from the radiologist, but my doctor feels good about it right now.  If we get a report back with anything major, he’ll call, but the plan for now is no chemo for the foreseeable future.  I will return MD Anderson every three months for scans.  If the nodules show no significant increase, I can continue to stay off chemo.  If they grow a lot, we’ll start chemo again.

Honestly, this was the absolute best news I could possibly get.  We are beyond thrilled.  Thank you for all the prayers.  They have helped immensely.

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Houston

We made it to Houston.  It was quite a drive but we listened to an audiobook to help kill the time.  My husband did all the driving and I slept off and on.  Normally when I come to Houston, it’s on my “off” week.  For some reason this trip is on my “bad” week.  So I’m feeling pretty exhausted.  I’ve thrown up a few times, but I’m hoping that it’s just the normal after-chemo issues and not that I caught Little Man’s stomach virus.  I really, really don’t want to carry that nasty stomach bug into a cancer hospital.

There were no openings in the hotel last night, so we stayed with my husband’s aunt and uncle.  We’re really blessed to have them here.  They’ve helped a lot on the trips out here.  This is the first trip where we have a car, so staying with them was an option.  They offered to let us stay the whole time but all of my appointments today are after 4:30, and it would be late before we got back.  It’ll probably be nine o’clock before I get back to the room as it is.  Tomorrow I won’t see the doctor until 2:00, so my husband and I are hoping to go to the aquarium in the morning.  I hope I feel up for it.

I’m not really nervous about this trip, but somewhat apprehensive.  I don’t know what he’s going to tell me.  Do I get a break?  If so, for how long?  A month?  Six months?  How often will I have to scan while I’m on my break?  Can I scan at home or will I still need to come to Houston?  I’m actually finally feeling so much better now that I started that new water pill.  I have lost 22 pounds of water weight in a week and a half.  Crazy hunh?  I feel like a new person.

That’s about all the news for now.  I will try to update as I know more.

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I Feel Good

I mean, I feel really good!  Dr. F. prescribed me a new water pill to take (along with the three I was already taking) and it works!  I cannot even describe to you how much water I was retaining.  The other day I had indentations on my legs from the seams on my jeans (which are normally really loose). My hands have not stopped swelling yet, but my legs and feet have gone down significantly.  I mean, I had put on 30 pounds in water weight! That’s crazy.  I had no idea how much it was affecting me – even mentally.  Everything hurt, all the time.  I have bruises on my feet just from wearing shoes.

But today was glorious!  I felt like myself.  I was able to pick up Little Man, take him to the store, take him out to dinner, and still have energy left over for the dishes.  This is huge!

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Wow, I didn’t realize it has almost been a month since I posted anything.  Cancer has a weird way of taking away my words.  I don’t always want to post negative things about when I’m feeling bad, and even when I’m not feeling chemo-sick, I don’t quite feel like myself, so I’m never sure what to write about.

Life keeps moving on.  We had a really good Thanksgiving.  Little Man went to his grandparents for a few days while my husband and I got a much needed vacation, then we were able to do Thanksgiving day with almost all of my husband’s extended family.  We made the decision after a couple of years of marriage that we would do Easter with my extended family and Thanksgiving with his.  So even though I was too sick at Easter to get to see my family, we were able to have a good time with everyone at Thanksgiving.  I pooped out at the end of the day, but I was glad that we were all able to be there.

I am currently on Cycle 6 of chemotherapy.  My body is so ridiculously swollen that I have bruises on my feet from wearing tennis shoes.  My doctor told me to keep taking the three water pills a day I was already taking, and she prescribed me yet another water pill to take.  We’ll see if it makes any difference.  It occurred to me that if I actually get to come off chemo for awhile I’m going to have to figure out which pills I”m supposed to keep taking and which ones I can quit taking for awhile.

I’m getting a little nervous about my next trip to Houston, which will be on the 12th and 13th.  There’s a term amongst cancer patients – particularly those in remission – called “scanxiety”.  Everyone gets nervous and anxious when it’s time to have scans done, because you never really know what they will show.  I’m nervous this trip, not so much about the scans but about what Dr. P. will tell me.  Will he allow me to take a break?  For how long?  Will I have to come back to MDACC to have my scans done as often when I’m on break or is is possible to do them here?  Or can the space between scans be larger?

We’re trying to work out taking an Angel Flight to Houston, so that my husband can come with me this time.  They keep telling me to have a back-up just in case, and I don’t know what that means.  I mean, if I buy plane tickets, I can’t get a refund if I don’t need them, right?  So then what’s the point of getting an Angel Flight if I have to pay for plane tickets anyway?  I don’t get it.  Regardless, I really want my husband there with me this trip, as we’re not sure what the doctor will say.  Not to mention he hasn’t even met my doctor in Houston.  He went with me on the first trip, with my misdiagnosis, and met that doctor but was unable to return with me when I went back to meet the sarcoma doctors.  My mom will come stay with Little Man while we’re gone.

Christmas is coming quickly and I’m so unprepared this year.  My mom helped me get my decorations out so my house looks fantastic and our Christmas tree smells phenomenal.  I make a point to play Christmas music every chance I get.  Christmas is always my favorite season as it also my birthday (Dec 22nd).  But so far I haven’t had any energy to do any shopping.  Everything may have to come from Amazon this year.  My husband and I decided not to get each other anything this year (though he says he’s still getting me a birthday gift), so that we can focus on Little Man, but I’m a bit stumped as to what to get him.  We think some more pieces to his train set, but other than that, who knows?  I think he’s finally old enough to understand about Santa this year, so I have to figure out which gifts are from Mama and Daddy and which gifts will be from Santa.  Moms and Dads who have done this -is there a rhyme or reason to it?  Is it half from Santa and half from Mama and Daddy?  More?  Less?  And what about stockings?  What do you put in stockings besides candy?  Help!  I need ideas!

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