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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I apologize for the length between posts, but illness has been kicking my behind lately.  After I returned from Houston, I got an extra week off for my body to try to recuperate.  It helped.  I actually felt like myself for three whole days.  It was so nice.  Then I started Cycle 5 and I caught sometime really nasty.  It was one of the worst things I have ever been through in my life.  Every single muscle in my body was screaming at me – it was as if I had run a triathlon without any training.  There were days when I sat in the recliner and didn’t move all day.  Literally.  I wasn’t able to eat, I couldn’t move… it was rough.  I just barely kicked that when it was time for chemo again.  This week is better, but it’s really more like the first couple cycles of chemo.  I’m tired and sore – the flu-like symptoms I’ve come to expect.  I’m sleeping ten hours at night and another four or so during the day.  My days run together; I really cannot believe we’re already halfway through November.

Lots of good things have been happening as well.  People have just been unbelievably generous to us.  I cannot even describe how blessed we are.  From the people who keep giving me Sprite (which helps with nausea) to unexpected checks or cash, to the fundraiser to coupons people give me to prayers and prayers and prayers, my family has been so amazingly blessed.  I have intentions of writing thank-you notes; I just have to find a day that I feel well enough.  Please know that everything you do is so appreciated.

The holidays are coming up and my husband and I are getting ready to travel.  We are blessed to be able to take a little vacation at the same time.  My parents have a timeshare on a condo at the beach and they are allowing us to go for a few days by ourselves.  The plan is to head to my in-laws this weekend, then leave Little Man with them during the week while we head to the beach for a few days, then head back in time for Thanksgiving.  I hope this time will be nice and refreshing, especially for my husband who has been working double and triple duty picking up all the slack for me.  He works full-time then comes home and works much more.  He’s doing 90% of the parenting, as well as preparing meals, doing the dishes, cleaning, taking care of me, grocery shopping… you name it, he’s doing it.  And he never complains.  God certainly knew what he was doing when he created this man for me.  I thank Him every day.

Spiritually, I’ve been in real dry cycle.  My prayer life has reached a screeching halt because I don’t know what to pray for anymore.  I feel so completely selfish when I pray for myself.  Somehow it’s okay when other people pray for me, but it just feels wrong to pray for myself.  So I tend to pray prayers of thankfulness, for my son and my husband, etc.  I pray for situations that come up, such as a house that burns down.  And I leave this big gaping hole where I should be praying for myself and my situation.  I don’t really know how to resolve it.  We haven’t been making it to church a lot lately because I’ve been so tired or ill, but we made it this week and the sermon was one I needed to hear.  It was about what to do when we’re in the “waiting periods” and goodness knows I’m in a waiting period.  Now I just need to listen to it again and start trying to do what he said.

Pray for me.  Not just for my cancer and my health, but pray that my heart would open and God would begin to work through me.  Pray that I would be open and receptive and that God could bring me to the place He has planned for me.

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Update from MDA

Sorry I’m just now getting around to the update, but it’s been a busy several days.  I had my scans on Monday night and met with my doctor Tuesday afternoon.  Scans look good; there is more shrinkage.  This is a huge blessing.  But even more of a blessing was what my doctor told me this time.  I expressed concern about the extreme amount of fatigue I have been having, about how it’s difficult to do anything.  Even walking from one place to the other in the hospital I had to take 3 breaks where I sat down and caught my breath.  And the airport? I had to use wheelchairs this time.  I can’t take Little Man anywhere by myself because I get tired out too quickly.  So, my doctor heard and understood.  First, he told me to take another week off before starting chemo again.  That means today is completely free and my body gets more chance to recover before starting again.  (This also, hopefully, means that I will have some energy on Halloween!)  My doctor then told me that we were going to reduce the dosage of one of the drugs by 25%.  This is huge; my local doctor was very relieved to hear it.  Next, he told me that if I still have the extreme fatigue I have been having with this next cycle, then for my following cycle I can not do the Taxotere at all (just have a Gemzar cycle).  Again, this is huge.  Finally, he told me there is chance that I can take the month of December off from chemo!  I’m really praying for that one to come true.  Nothing would make my Christmas like not having to be on chemo.  So it was good news all around!

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Good-ish Week

This week is normally my hard week after my long chemo.  I think I’ve had enough cycles now that I know what medications to take to head off the major symptoms.  That means this week my only issues were nausea, loss of appetite, and tiredness.  I napped every single day, whether it was intentional or not!  (One day I fell asleep in the chair for about three hours.)  I tried to do laundry, but it was too much for me, and I probably should have known that.   We ate a lot of easy meals (frozen casseroles and such) and I went to bed early every night.  But I was able to play with my son on a couple of nights and I was able to run errands with my mom today.  I feel pretty good about all this, even though it was not an easy week.  I keep wanting to be able to do more, but I know there’s a limit.  I feel like this week was one of the better “hard” weeks that I’ve had.  The loss of appetite was the hardest, because if I didn’t eat I didn’t have any energy.  It was a vicious cycle.  But there were meals I just couldn’t eat this time.  I know they’re going to get onto me about my protein when I get to MD Anderson on Monday.  A friend promised to send me some protein shake recipes, so maybe that will help when I just can’t eat.  Anyway, I just wanted to post that I had had a pretty good week.

 

**I’m headed to Houston for scans and to see my doctor on Monday and Tuesday, so prayers for safe travel and good results will be most definitely appreciated!

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Loss

Today I’ve been thinking about the child we lost.  She (I have no basis to know that it was a she other than my gut) would have been three months old this month if the cancer hadn’t taken her from me.  My body just couldn’t sustain this huge mass growing in me and a child; and now I will never be able to be pregnant again.  It hurts, at times.  I know that she is in heaven and we will see her one day, but sometimes I just ache to hold her.  I look at our son and wonder how different his life would have been if he had a sister.  I wonder how different my and my husband’s lives would be.  It would certainly be different this time around.  I know nothing about bottles or formula, but I definitely wouldn’t be able to nurse with all this poison in my body to try to kill the cancer.  Would I still be traveling to MD Anderson?  Would I take the baby with me?  I don’t know because those choices were taken from me.  And that is probably the hardest part of cancer – it takes your choices from you.  Granted, I have new choices now – chemo or not?  MD Anderson or not?  But my choice today would have been to pick my son up early, have time to play with him, go to Bible study, and give my husband some time off.  Instead, I had to choose not to pick him up because I can’t risk going to the day care and picking anything up after I threw up last night.  We’re not going to church tonight, for the same reason, but we are going to attempt to walk around the neighborhood as a family.  As tired as I’ve been, I don’t think we’ll get far, but we’re making the effort.   My choice all week would have been to clean and put up Halloween decorations, but I get completely wiped when I do anything.  (Washing the dishes yesterday cost me a three-hour nap.)

I’m okay.  I’m feeling a little down, but I’m otherwise okay.  I know Who gives me my days and I am thankful for each and every one.  I just occasionally want to post to let you know what sort of things can get me down.  Prayers are always appreciated.  Friday is my big chemo day and Saturday is the fundraiser, so I expect to be tired (but hopefully a “good tired”) next week.  But who knows?  My symptoms haven’t ever really followed any sort of pattern.  Maybe I’ll have the best week ever next week!

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Can You Help with the Fundraiser?

The fundraiser is happening on Saturday and it is filling up fast.  We need a little help on the day of the fundraiser, mainly with paperwork-type stuff.  There are some photography release forms that have to be filled out and money that has to be collected, so we need someone to help with those things.  I can probably do the release forms if necessary, but I figure people might be a little weirded out if I’m handling the money.  If you’re in the area and are willing to help, please let me know!  Thanks!

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