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ATRA Be Gone… For Now

Posted by tokenhippygirl on February 3, 2011
Posted in: leukemia, My LiFe. Tagged: , , , . Leave a Comment

Yay!  The beginning of this new cycle has come to a close as I took my last dose of ATRA this morning for another three months.  I’m thinking that the headaches will finally be gone, for three months anyway.  Makes me happy. I didn’t know I would have this particular side effect actually… until I did.  I didn’t realize I would have side effects.  It’s the first time in this whole process that I’ve taken it after not taking it for awhile, and also not taking it either during or not long after a round of major chemo.  So, I actually noticed I had side effects from the ATRA this time.  Terrible headaches for the first five days or so which lessened over the rest of the course of it but never went away.  Here’s hoping by tomorrow some time I will be headache free for awhile!

I’m glad this round of ATRA is over, but don’t get me wrong… I’m all for taking it.  It’s helping to cure what was ailing me… good and big stuff that.  So in my book ATRA = really good…. I can handle a few headaches.  :-)

Good News And Bad

Posted by tokenhippygirl on October 1, 2010
Posted in: Family, leukemia, My LiFe. Tagged: , , . 1 comment

So I had the blood draw today.  Good news… the neupogen must be doing it’s thing because my white blood count is up a bit, not normal range, but up, and my neutrophils are up enough that I’m no longer neutropenic… yay!  The bad news… my red blood counts are all down.  Not unusual since this is my nadir period.  Nancy said they could still be going down a little.  The thing is… they are down enough that my oncologist decided I needed a transfusion.  Bummer.  I have to go in tomorrow morning at 8:30 to get it.  Poor Karen.  First day back and she has to get up early to take me in for a procedure that takes about 4 or 5 hours.  At least we will get to talk.  I love that she’s home.  I haven’t said much about it, but it’s been hard at times not having her here.  I’ve been through quite a bit in the last month and have missed having her with me.  I’m so glad she was with Mary during this time, but I did miss her terribly!

So, another damn IV tomorrow.  Hopefully my last for a long while.  Good thoughts for that.

Day 15

Posted by tokenhippygirl on September 30, 2010
Posted in: Family and Friends, leukemia, My LiFe, The U.K., Travel. Tagged: , , , , , , , , . 1 comment

It’s been a few days since I posted anything.  Not much happening around here, for me anyway.  Just laying on the couch being sort of tired as my numbers are down.  Blood draw tomorrow.  Here’s hoping the neupogen has done it’s job (had to get three more shots, for a total of 11… the last of which I gave myself today) and the white blood count and neutrophil count are up.  Tomorrow is technically my nadir (the low point) so even if the neupogen hasn’t given me raised numbers they should start coming up on their own.  I’m hoping for a more rapid increase because of the neupogen, but we shall see.  As to my tiredness… my red counts were down on Monday…. and according to reports  from Mom and Kev I’m looking pretty pale, which I always do when my counts are low.  The neupogen doesn’t do anything for the red counts, so we just have to wait for those to come up on their own.  They usually take a bit longer normally  Again… interesting to see what they will be tomorrow.

The good news is that I haven’t gotten a fever so far… knocking on wood now… and so haven’t had to go to the hospital this time around.  I’m hoping that holds and I don’t get one, and don’t have to go.  I guess if I do I do, but it would be nice not to.

The best news is that Karen comes home from England tomorrow.  I know she is having a hard time leaving Mary, Martin, and Sebastian, and I totally sympathize with all of them.  This long long distance thing is so hard.  I am glad though that she’s coming home to me.  I have been so well taken care of by Mom and have loved having her here, but I’m sure she’s ready to go home as well.  Mom says she’s loved spending this time with her kids… after all, when does a Mom get a chance to spend a month with her grown kids like this.  Pretty nice, even if the circumstances haven’t been ideal, it’s been wonderful.  I have missed Karen terribly though and am so glad she is going to be on her way to me in just under two hours.  It’s a long journey for her… she will be traveling for 18 hours… and she will be exhausted.  But, she will be home…  It’s been our longest time of separation and I can’t wait to see her face.

Yep… Neutropenic

Posted by tokenhippygirl on August 30, 2010
Posted in: Family, leukemia, My LiFe. Tagged: , , , , , . 3 comments

Here we are… day 10 from the start of the last consolidation, and I am very neutropenic again.  Red blood cells and platelets are OK, and normal, but the WBC and neutrophils are low low low.  Nancy says the lowest they’ve ever been.  She said no big deal other than I have to be very careful with myself… the usual when I am neutropenic.  The biggest thing is infection, making sure I take my temp a few times a day since that would be the only sign of infection.  Nancy says this med, the chemo this time around, is new to me, so we really didn’t know how I would respond… and here it is.  The other thing is that my numbers were just coming up when I went into the hospital this last time, so the fact that they went down so fast isn’t probably that unexpected (this is my and Karen’s guess, Nancy didn’t say this).   Who really knows.  I’m hoping they are down, and will spring back faster than last time.  It took them a week or so to come up last time.  This could be the bottom, but then maybe not.  I don’t know how they could get any lower, but then I guess anything is possible.  Let’s just hope the RBCs stay up, as do the platelets.  No transfusions if I can help it.  :-)  And let’s hope the numbers come back fairly fast so I can get out and about again fairly soon.

Otherwise I am hanging at home, watching the US Open first round on TV, Karen is working and gathering stuff to get ready to pack tonight, and things are pretty normal around here.

Hope everyone is having a great day….

Tuesday… Day 10

Posted by tokenhippygirl on August 2, 2010
Posted in: Family, Food, leukemia, My LiFe, Riley, Weston. Tagged: , , , , , . Leave a Comment

Went in for the blood draw today.  After that we sat in the waiting room of the oncology department for an hour waiting for an advice nurse.  She finally came out to tell me that the sore spot on my hand, the one with the lump in it that is where I had an IV during my last hospital stay, has phlebitis.  Apparently either the push was too fast for that vein or something.  Either way the vein got inflamed, which is why it’s sore.  The advice nurse told me if we got to it earlier it would’ve been easier to treat.  I asked her if it would go away and she said possibly/probably after a long time.  Yeah?!!  I’m hoping it does.  I’m going to try the treatment she said it needed initially and see if, a week later, it still helps.  Basically we’re talking ice and heat and tylenol.  I’ve already done the tylenol.  LOL  We’ll see what the ice and heat do for it.

As for the blood numbers…  They are down… the white blood cells and neutrophils down quite a bit.  I’m not neutropenic yet (and maybe won’t be), but we won’t really be able to tell which way my numbers are going until I get the draw on Thursday.  For now we are going to act as if I am neutropenic just in case they are going down.  They are close enough that precautions won’t hurt.  We know what to do.  No fresh fruits or veggies, no people with colds or people who have been around people with colds, no dirt, and no people who have cleaned the cat box (strange I know, and we don’t really know why, but this is a biggie).  Apparently being around the dogs is OK.  At least that’s what they told us before.  We are going with that.  And really… I’m not neutropenic yet, and again, may not even get there.

It was a long Monday.  Karen was/is exhausted.  My honey had to get up at 5:45 this morning for a meeting and then worked non-stop, meeting after meeting, until we left for the clinic at 2:15.  That all on top of not really sleeping that good.  She then drove me to the clinic, waited with me for over an hour in the waiting room like the trooper she is, drove home (with a stop at the store), made dinner, and then cleaned out the fridge of fresh fruit (she is sitting in front of a bowl of watermelon trying to eat it, with Kev’s help, so we can get the fruit out of here) and then cleaned the fridge where the fruit was.  I know I keep saying this… but, I love her.

The dogs just got a rare treat… a taste of watermelon.  They don’t normally get people food…. other than an occasional veggie mixed in with their food, but they are always happy when they get a little treat.  Like now….

Wow…. Green Around the Gills

Posted by tokenhippygirl on June 17, 2010
Posted in: leukemia, My LiFe. Tagged: , , , . 3 comments

I haven’t posted in a few days. Couldn’t muster up the strength to even hold the laptop let alone blog anything of significance.. Now though, well now I am having a moment. Not to say this day is going to be awesome. But… this moment is a better moment than it was even this morning. Relativity. It’s all relativity.

Today I go liquid…. they are putting me on a liquid diet. As in through the IV. I was asked if I was allergic to soy and eggs. LOL Too funny. Uh, no, I’m not, I’m also not allergic to chocolate mousse… if you feel like throwing some of that into the bag. Feel free.

Why the liquid diet you ask? Well… seems my intestinal track is shot right now. The whole damn track of them… throat to bowls. Anything that goes in comes immediately out. The system is down… mayday, mayday…

The solution, to give my whole system a break, is for it to be basically bypassed. Hence the chocolate mousse nutrition.

I have had some not so enjoyable days lately… spiked a couple of temperatures (and let me tell you how they go into action when a neurtropenic spikes a temp (blood draws and cultures, chest x-ray, UA, and a freshly hung bag of antibiotics next to the saline) They test everything… trying to see if I have some kind of infection), tired, lots of nausea, some throwing up, major major… well… the big D (don’t mean to get too graphic, but then this is my record, my story, my blog and… it’s the truth). Karen helped me to the bathroom last night every 30 minutes or so. Neither of us getting any sleep.

In fact, I’m sitting here blogging and just actually dozed off. This might be first for me… napping while blogging. Could make for some free form comments. LOL

This laptop rocks….

Anyway…. sick. I had my 6th transfusion now and more platelets than that. On a brighter note… I think I might be starting to loose my hair. Not sure, but it sure seems like more than usual is coming out in strands when I run my fingers through it. Soon I may be able to tap into my ever growing stash of fabulous hats, scarves, and do-rags. No more hair to have to keep clean. I think it’s coming.

Oh man… one of the nurses just brought in her puppy… so cute. I couldn’t touch her… they had to keep he in my door way, but they brought her in. Makes me miss my babies. Though yes, I know Kev and Mom are definitely taking such great care of them. I still miss those little buggers.

This post is sort of rambling on… no real direction. Must be because that’s how I sort of feel right now. A bit disheveled and very very tired. LOL I just typed bery bery tired. I think that’s how I should leave it. Too funny. I’ll try to be more communicative in the future, if I can.

For all my friends and family… you mean everything to me. Your love and support is definitely being felt up here. It’s surrounding me and buoying me up. Karen keeps reading your thoughts and good wishes to me, relaying every last word of love. I am, as I said before… so blessed.