Leukemia

All posts tagged Leukemia

Go Live a Normal Life

Posted by tokenhippygirl on October 3, 2012
Posted in: Leukemia, LiFe. Tagged: , , , , , . 6 comments

I’m crying.  I can’t seem to stop.  I dry up for awhile, and then there they are again, tears falling down my face uncontrollably.  I’m not sad… no, not at all.  These are tears of joy.  Tears from days, and weeks, sometimes hours, and two years and four months.

Wow.  What should I do now.  It hasn’t sunk in yet.  I think the sinking in will take some time.

I had blood work yesterday, it was great, then an appointment with my oncologist this morning.  The appointment was fast.  He looked at my blood work, said it was fantastic, listened to me breathe a bit, answered our questions, and then said to me go live a normal life. A normal life. Normal.  Life.

I’m overwhelmed.  Two years and four months, to the day, since diagnosis.  15 pushes of hard core chemo, three bone marrow biopsies, more blood work than I can count, pic line, pic line removal, tests on my heart, x-rays on my lungs, more pills of ATRA than I can count, trips to the urgent care, somewhere around 45 days in the hospital all together, 1065 pills of 6MP, 102 shots, and all the other thousand and one things that’ve gone on over the last two years and four months. Every week, for two years, every week… every Wednesday at 10:00 am.

Now?

Well now I guess I go live a normal life…  and here come the tears again.  They are welcome, and so is the joy the accompanies them. Live a normal life.  Normal.  Life.  That sounds really good to me.

ATRA… You’re Back

Posted by tokenhippygirl on July 11, 2012
Posted in: Leukemia, LiFe. Tagged: , , , , . 1 comment

Here I am, last cycle, cycle 12.  I met with my oncologist in Illinois last Tuesday before we left for Oregon to have my every three month check up.  I asked if I could start the ATRA after we got to Oregon, meaning today, instead of last week.  Didn’t really want to get the whole ATRA headache while we were road tripping.  Dr. Graham was cool with that.  So this morning I took my first dose.  I can’t believe this is my last round of it.  Today I meet with an Oregon oncologist who will be supervising my care while I’m here.  Not the same doc I had before as our insurance is changed, but we have the appointment all set up with this new guy and they are planning on giving me my shot afterward.  We’ll see what the dealio will be here, probably the same as what I’ve had in Illinois.

Cycle 12, last round of ATRA… amazing.

The Power of Two

Posted by tokenhippygirl on June 1, 2012
Posted in: Leukemia, LiFe. Tagged: , , , , , , . 1 comment

Here it is, June 1.  I am amazed this much time has passed.  Two years.  Two.

Two years ago today I was a sick puppy and ventured into the urgent care, on the insistence of my honey and of the nurse who I’d talked to on the phone.  Urgent care to hospital via ambulance a few hours later and the adventure began.

I can’t believe it’s been two years.  Wow.  I’m blessed, lucky, and so very grateful for all the men and women who have, over the course of the last two years, provided me with amazing care.  From urgent care numerous times to hospital numerous times to infusion centers and labs and doctor’s offices I have seen the best of what humanity has to offer.  These countless people treated me and continue to with such respect and gentle understanding I am humbled.  From Oregon to Illinois I’ve been lucky to know them all.  The genuine way they listen and treat is phenomenal.  I wish I could hug each one and let them know how much they have meant and continue to mean to me.  Having told them and continuing to tell them thank you just doesn’t seem like enough.

Two years.  This is a great grand life I’m living.  If this experience has taught me nothing else it is that a person should constantly, to the point of over doing it, express how much they care for and love the people around them.  They are what makes our life fantastic and lovely.  Nothing else.  So to the universe of people out there, old and new, who I know and love and who have shown such great support and love throughout not just this experience but my life, I love each and every one of you.

 

Give Me an A, Give Me a T, Give Me an R, Give Me an A… What’s it Spell?

Posted by tokenhippygirl on January 11, 2012
Posted in: Family & Friends, Leukemia, LiFe. Tagged: , , , , , , , . 4 comments

ATRA…

It’s cycle ten, people. Can’t believe it. 19 months since this all started and only just over nine months to go. I saw my oncologist today. The every three month visit. I had a couple of concerns as my liver counts had been elevated for awhile. My GP even ordered an ultrasound last week to make sure everything was ok. The results came in last Thirsday and it was good. But the numbers were still high… She thought it might be my chemo meds, but since my cholesterol was also good on the lowered cholesterol med, and I’m on an eating plan and working out again, she decided to take me off the cholesterol meds completely to see what happens there. I’ll be tested in late March to see if I can stay off of them. It’s also less taxing on my liver to be off them.

So today… Met with my oncologist. My numbers, CBC and Metabolic panel, were all good. Even my liver numbers, save one, we’re all back in the normal. The one that wasn’t was barely elevated over high. And this was me…. Sigh…. Relief. My doc allayed all my anxiety, which always rears it’s head in a big way right before I have the quarterly. To say I get anxious doesn’t fully describe it… I’m usually afraid of the what if. Not rational, but true none the less. This is when Ativan is my friend. That and hearing him say everything is great and I’m doing fantastic. Yes brother… Thank you!

So here I am… Cycle 10. Two to go. Entering the realm of taking 9 ATRA a day for 15 days on top of the weekly shot and the daily 6MP I’m already taking. Headache… Here we go. Tylenol and staying hydrated… Both become my good friends. And before you think I’m complaining… I’m certainly not. ATRA saved my life… Along with hardcore chemo, the love of my honey, family and friends, and fantastic medical staff. So there’s no complaining out of me. Zip.

What there is… There’s a huge sense of being grateful, being alive, being blessed with more love from family and friends than I can measure. Life, this life.. My life… It’s beautiful. And I am thankful for it, and for the ATRA I start taking today.

Cycle 10, people…. I’m in the last several months of maintenance now. This life is a wonderful miracle and I am more fortunate than is possible to express. So ATRA… Let’s go!

Busy Weekend

Posted by tokenhippygirl on October 31, 2010
Posted in: Eats, Leukemia. Tagged: , , , , , , . 2 comments

It’s been a busy busy weekend.  Friday night dinner at Stan and Connie’s, with Stacia, Kev, my honey and I.  It was a great time.  Excellent food, as always, fantastic company ( I love you guys), and just really relaxing and comfortable.  Then yesterday Karen and I headed over to Maggie’s for a pumpkin carving party (plus chocolate treat making and some great ribs… thanks again Kate!).  We carved pumpkins, made chocolate pretzel treats, ate some great ribs, chatted it up with the pod (the name we all use for this particular group of women we hang out with), and watched some football and the World Series game.  Also a fantastic time with a fantastic group of women.  We love you guys.  It’s always so good to spend time with you.  This time pretty special since it was the first time we’ve been able to get together since the whole leukemia thing happened.

Today, Halloween, we are hanging at home.  Karen and Kev are out doing yard work… picking up and blowing leaves.  Quite the chore around here.  Earlier they went to winterize one of our rentals (they also picked up a chicken sandwich and potato wedges for me… my first craving realized.  :-)  I have started craving stuff again.  It’s a thing I really never thought about before, but craving stuff is something I haven’t done in the last few months, my appetite and such is coming back… it’s a good thing.  It’s actually pretty nice out there.  Perfect fall day for doing the leaf thing.

This week coming up I have a blood draw, a bone marrow biopsy, and possibly my weekly shot on Wednesday.  Last week my neutrophil and white counts were down a bit after getting the shot the week before and taking the low dose chemo for a week (the red counts were up a bit, which is great for the energy level).  We asked my doc some questions about it, he looked into it a bit, and ended up taking me off the pills (since Friday) and we may hold off on the shot.  I will be back on both when my counts are up again.  He may adjust the pill or shot amount to keep my counts from dropping too low.  We don’t know how low they will go if I stay on the current doses, etc.  It’s a process of finding the right thing for me.  I’m still on the ATRA (I have a few days left on my 15 day cycle this round), but the other stuff, both low dose chemo, is on the back burner until after the blood test this coming Wednesday, which will happen before the bone marrow biopsy.  Then, on the 10th, after another blood test, and probably a shot, we have an appointment with my doc to chat about maintenance and everything.  We are trying to get the plan, and me, stabilized so that Karen and I can go to England in December and January, as planned.   Everyone cross your fingers, send those vibes and prayers, wishes, and hopes, that all goes well this week and that we get everything else worked out.  It would be great to meet my grandson and spend Christmas with him and his parents.

For now, today… I’m keeping track of my fantasy football teams and hoping for a couple of wins (I’m in two leagues… LOL).  I am also hoping for a win for my honey.  Goooooooo honey!

Maintenance

Posted by tokenhippygirl on October 20, 2010
Posted in: Eats, Family & Friends. Tagged: , , , , , , , . Leave a Comment

Hey all… been a few days.  Again.  We had a busy weekend, a lay low day on Monday (Karen had to work, but we didn’t go anywhere), went to get some new glasses ordered for Karen yesterday and stopped off at the park to take the dogs for a walk on the way home, and now today we are going in for my first shot and to pick up my meds and do my blood draw.

Last weekend… had a great weekend.  Went to a family dinner at Mom and Don’s place on Saturday.  It was great seeing everyone.  Really good.  Had some tasty vittles as well.  Then Sunday we went to Chris and Jessica’s wedding.  It was great seeing so many people from the Juvenile Department.  I miss them and it’s always so nice to spend time with them.  They rock.  The wedding was nice as well.  Casual, comfortable, and laid back.  Nice.  Congratulations Chris and Jessica!

Maintenance starts today.  Two years of it, but hey… I get to get back to more of a normal life.  That’s the best part.  I will have a shot every Wednesday that we have to go to the clinic for and a med I’ll be taking every day.  Then there’s the ATRA that I will take for 15 days every three months.  Not too bad really.  We can work around it.  We picked Wednesdays for the shot so that we could go away for a long weekend if we wanted to and it wouldn’t interfere.  We are now working with Nancy to try and get it squared away for our planned trip to England over Christmas.  We already had our tickets before this all started and now are trying to work it out so that I can get my shot from an oncology department either in Lancaster or close to it.  Go Nancy!

I have an appointment with an ear, nose, and throat doctor on Friday.  My oncologist referred me.  I have this itchy throat that won’t quite go away.  Some days are better than others, but it’s annoying.  It makes me cough… sometimes so hard I start gagging.  Though I have a really sensitive gag reflex so it doesn’t take much.  But anyway… Dr. Bigler didn’t see anything in my throat, but wanted me to see someone who could look a little bit more.  They may put a little camera down my throat… yuck.  We shall see on Friday.  I just hope they can do something about this itch.  Maybe it’s allergies… maybe it’s my throat, etc. healing after my GI track was beaten up all this time by chemo… we don’t know.  Like I said… we shall see what the doc says on Friday.

Otherwise…. the weather is good.  Supposed to start raining tomorrow evening, but for now it’s beautiful. Blue sky out there.  Really lovely.  I love fall weather actually… it’s sunny, yet crisp out there.  It’s supposed to get up to almost 70 today, which is wonderful, but it’s crisp out there right now.  The light is always so fantastic in the fall.  Did anyone see that moon the last few nights?  Wow.  So bright out there.  Hope everyone has been enjoying these lovely lovely days!

Good News And Bad

Posted by tokenhippygirl on October 1, 2010
Posted in: Family & Friends, Leukemia. 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: Leukemia, 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.

Neutropenic… Again

Posted by tokenhippygirl on September 24, 2010
Posted in: Leukemia. Tagged: , , , . 4 comments

Just got the news from today’s blood test.  I am, once again, neutropenic.  Numbers are low.  They are hoping they don’t stay low for long, given that I’m on the neupogen.  Here’s crossing our fingers, toes, and whatever else you can cross, that I don’t get another neutropenic fever.  I haven’t had a fever at all so far this time around.  I’m checking, as I’m supposed to, several times a day.  It’s day 9 of my cycle.  Usually my nadir is around day 16, nadir being the lowest point.  I got the fever last time on day 12.  Come on Neupogen, do your duty!!

Otherwise I’m a tad tired, but doing OK.  My red counts are all down slightly, but not enough to really matter.  I’m still way far away from having to have a transfusion or to have platelets.  That’s all good.

Had a great visit from Stan and Stacia today.  They were here for a bit.  Always nice to see them.  I’m feeling tired now, sorry Jimmy for putting your visit off.  Getting the number news sort of zapped it out of me.

One day at a time folks… so far today is OK.  Cheers all….

Emotional

Posted by tokenhippygirl on September 10, 2010
Posted in: Family & Friends, Leukemia. Tagged: , , , , , , , , , . 6 comments

Man oh man… I have been really good about holding it together through this process.  Staying focused, not letting it get the best of me, etc.  Very good actually.  Keeping my eyes on the prize as they say… the end of the consolidation rounds, entering maintenance, not having these ups and downs in my numbers that cause all this other craziness to happen.  I’ve been doing great…. and then today happened.

I know it’s natural… bound to happen.  I just kind of have been falling apart all day.  Crying, feeling overwhelmed.  Really missing my honey.  Wishing I could be with her and our new grand baby.  Or even wishing she was here.  I know I will get a grip.  Tomorrow will be better and I will be back to my fighting self… it’s just been tough today.

Taking a big breath right now….

OK… snapping out of it.

Don is here tonight.  He came to spend the night and part of tomorrow with his honey.  So nice.  And… Stan, my lovely friend, came to visit me today.  It was good to see him.  Always is.  His daughter is in the process, I think, of giving birth to his new grandchild.  Only three days apart from ours.  Kinda cool.

I’m bucking up… getting it together.  This has been a message from your emotional broadcasting center… but this has only been a test.  We will resume our regular broadcasting immediately…   not as emotional… strong, determined, and resilient.  That’s the me that’s getting me through this…. and will continue to.

Back In

Posted by tokenhippygirl on September 2, 2010
Posted in: Family & Friends, Leukemia, The U.K.. Tagged: , , , , . 2 comments

Well folks…. I’m back in. Spiked a fever and had to come in for antibiotics. My counts are very low… So the plan… I have to be here until my counts reach a certain level. Until then I’m here, on antibiotics every six hours…. And constant saline. We are hoping not too long, but it’s all number dependent… So we’re rolling with it. Mom’s been fantastic!

My sweetie made it safe and sound to Lancaster…. No real travel hiccups. I’m so glad. I love that woman!

Yep… Neutropenic

Posted by tokenhippygirl on August 30, 2010
Posted in: Family & Friends, Leukemia. 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….

Blood Clots… Oh My

Posted by tokenhippygirl on August 12, 2010
Posted in: LiFe. Tagged: , , , . Leave a Comment

Got a call this morning saying that they had scheduled me for an ultrasound. I’d called the oncology advice nurse yesterday because my veins were still sore from my last round of chemo. Results of the ultrasound were that I have two small blood clots…. One in my arm and one in my hand. Two oncologists talked to the radiologist who reviewed the ultrasound and determined that I have superficial thrombosis. No treatment (which would have been anti coagulation drugs) was needed. Unless other symptoms manifest they should resolve on their own. I’m supposed to have another ultrasound in four weeks to make sure things are copacetic. Until then it’s ice and heat and hopefully the pain will go away.

Otherwise there’s no word yet on the loos draw I had today as well. I will share that news when we get it.

Hope everyone is having a fantastic Thursday. I feel better knowing what’s up with my arm and hand. The moral of the story is…. Get it checked out if it’s out of the normal. Cheers everyone.

A Tale of Two Counts

Posted by tokenhippygirl on August 9, 2010
Posted in: Eats, Family & Friends, Leukemia. Tagged: , , , , , , , , , , , . 3 comments

Went in for the blood draw today.  Counts are in and it’s a mixed bag.  My hematocrit and hemoglobin (red blood counts… RBC) are up a bit.  My platelets are down a little, but still in the normal range.  My white blood count however, along with the neutrophils, are down again.  I’m still in the moderate range of infection, though my neutrophils are only a smidge above high danger of infection range.  I’ve been here before.  Hopefully we are bottoming out here and by Thursday they are coming up, but one never knows.  That’s the hope.  I feel pretty good (because of the still decent red blood counts) and it would be great to be able to get out of the house safely, without a mask (Had to wear one today when going to get the draw and have to every time I leave… which I don’t really unless I’m going to get a draw or go to the clinic). I am, once again, the boy (or in this case girl) in the plastic bubble.  LOL  Kev offered to get me the suit, the one that’s self contained with the helmet.  I said no, for now… :-)  I look at it all this way… the counts are down means the chemo is doing it’s job, which is what we want.  We want it to do it’s job so that’s a good thing.

My spirits are pretty good for the most part.  They go up and down as one would imagine, sometimes all in the same day.   I still have moments where the anxiety kicks in and then Ativan is my friend.  The anxiety doesn’t happen often anymore, but it does still happen.  It’s natural and very normal even though, for me, it’s a bit strange since I’m usually so mellow as a person.  But again, it’s pretty normal to have these anxiety attacks when going through something like this.  I get through them.  I always know what they are, so even during one I’m saying to myself… it will pass, it will pass.  And it always does.  I got on the treadmill today and then took a long hot bath.  Both good for the soul, and the nerves.

Karen just left for the store… more milk for cereal, batteries for the garage door opener, bread, ham for those panini sandwiches I love, and some cookies for me.   I didn’t crave sweets for a couple of months, but now every once in awhile I am craving them.

I’m watching the show Challenge on the Food Network (the Food Network and HGTV are my staples… along with the Travel Channel and whatever channel is showing a movie I might like to watch.  Earlier today I watched the Inside Man… not stellar, but watchable.  I’m not that picky.  I’ve even watched some Lifetime movies… yeah, I know… shudder at the thought.).  The challenge today is sandwich making.  Sandwiches are one of my favorite things to eat.  Yum yum!  It’s making me crave my favorite sandwich… the hot pastrami on challah bread from Kornblatt’s Deli on 23rd.  Now THAT is a sandwich.  SO good.  I will just add it to the list of restaurant foods I want when I can have them (can’t have food cooked in restaurants while I’m neutropenic… good thing my honey makes some tasty vittles!).

On that happy note… time to sign off of today’s entry and get down to figuring out what to watch (sandwich challenge is over)… and the winner is HGTV’s show Property Virgins.  You should check it out if you haven’t.

Dancing Bald

Posted by tokenhippygirl on August 6, 2010
Posted in: Eats, Family & Friends, Leukemia, Riley, Weston. Tagged: , , . 1 comment

Last night I discovered something amazing… I dance better bald.  It’s true.  Granted I was sitting and dancing, but that just makes the head movement all that more important.  I’m sure it’s true though, so it can only mean one thing… hair creates resistance.  My head moves more freely naked.  A positive since we dance a lot around here.

Today has been a pretty good day.  Karen went into the Portland center to finally clean out her office there (she hasn’t used it, really, since she started working from home but still had stuff there.  This was the last of it for her and I’m sure makes her feel good about finally getting it done.

While Karen was gone Mom came over to hang with me.  It was great getting to see and spend time with her.  Mom is great company.  She also watered some plants outside and repotted a plant someone had brought as a gift for me.  Nice Mom… you rock!

Now there’s a lasagna baking in the oven and Karen and Kev (and Riley) are out in the shop working out.  I’m here in the house blogging, watching TV, petting Weston, and waiting to eat the food my honey has made.

The Return of Neutropenia

Posted by tokenhippygirl on August 5, 2010
Posted in: Family & Friends, Leukemia. Tagged: , , , , . Leave a Comment

Went in for the bi-weekly blood test today and the results are in… I am, once again, neutropenic… yay????? (sarcasm folks!  LOL).  Good thing we were preparing for this and acting as if I was already.  The only no no we committed was that I went in for the blood test today without a mask on, and then we went into Starbucks and I didn’t have a mask on.  We told my caseworker this and she said that I am on the edge of neutropenia… 1.4 WBC and .715 on the neutrophils.  They are low, granted, and I am neutropenic, but they aren’t in the really really low category.  The good news is that the RBC counts are all still OK, so are the platelets.  At least I don’t need a transfusion, which I could’ve told them anyway since I don’t feel really really fatigued.  I do feel a bit tired, but really today I have been feeling pretty good.  I got a little stressed after finding out I was neutropenic, but hey… I’ll get over it.  We were hoping my numbers might be coming up from Monday.  My caseworker ventured a guess to say that she expected they might start coming up by Monday’s test.  I hope so.  The other issue is the herpes I have on my lip.  It started showing up today, which makes sense since this happened to me in the hospital when I was neutropenic.  My body can’t fight it right now so Karen is now on her way to the oncology pharmacy to get a new prescription for me… the same anti viral they gave me in the hospital to fight the lip thing.  It’s not that bad now, pretty small really… we just noticed it and told Nancy about it and she sprang into action.  We don’t want it to get bad so we are being proactive.  The other good news is that I still have no fever.

It’s an adventure this is…  Nothing really changes for us since we have already been acting as if I am neutropenic.  Here’s hoping the numbers rise as of Monday.  :-)

11

Posted by tokenhippygirl on August 3, 2010
Posted in: Family & Friends, Leukemia. Tagged: , , , , , , . 1 comment

Tuesday… Blood results were as expected, I guess.  White blood cells and neutrophils are low, though I wasn’t in the neutropenic range yet.  We don’t know if they are still falling or going up, so we are acting as if I am neutropenic as they weren’t that low, but they were close enough.  My red blood cells are still in the normal range so I’m not needing a transfusion.  Hopefully I won’t need one.  I really don’t want to have to get the IV if I don’t have to.  I’m feeling a tad tired, but not really that bad, which is good.   The truth of the numbers will be told by the blood draw on Thursday.  We will at least know if the numbers are still doing down or coming up.  It will be good to know.

Karen has been and is still swamped with work.  So busy.  Loads going on, problems she’s needing to solve, etc.  At least she got some sleep last night.  Makes it easier for her to deal with all that’s going on.  She’s loving the weather right now… working outside on the back deck under the umbrella at our little table.  Her laptop fits and she’s got the phone with headset.  The dogs are both out there with her, laying on a blanket in the shade.  Rough life for the little dude and dudettie (one of Karen’s nicknames for Riley… there are a million of them, all cute).

Thanks everyone for following along, for sending those great vibes, thoughts, prayers, etc.  I know I keep saying this, but I feel them and they matter to me.  This journey has been a bit isolating (out of necessity) and getting notes and comments and such from all of you lets me know, and keep knowing, that I have such a big group of people out there who love and care for both Karen and I.  It matters to me and to us more than we can say.

Tuesday… Day 10

Posted by tokenhippygirl on August 2, 2010
Posted in: Eats, Family & Friends, Leukemia, 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….

Day 9

Posted by tokenhippygirl on August 1, 2010
Posted in: Family & Friends, Leukemia, Riley, Weston. Tagged: , , , , , . Leave a Comment

Sunday, day 9.  It’s been a similar day to yesterday… decent morning, slightly rocky afternoon… but not bad.  My honey went to the store today, cleaned the house, and has been outside washing cars and cleaning and weeding and playing in the shop.  She is a busy girl, and amazing.  The little girlie is out with her, the boy is laying next to me on the couch chewing on an old bully stick Karen found in the car under the seat.  He is a happy little man.

It’s beautiful out there again today…. a little hot (I was just outside for a couple of minutes) and a tad humid, though that could just be me and my bald head in the sun.  I wasn’t out for that long.  Now I’m here again, on the sectional in the family room, watching the third in the Librarian series on TNT.  These movies are so corny and not that good, but that sort of makes them good.  I can’t seem to stop watching them.

Tomorrow Karen is busy busy in the morning… she is still getting emails today about that work situation yesterday… and then, in the afternoon, we are going in for my first blood draw of this series.  We will see what my numbers are.  I think they are down, but I don’t feel that tired, so maybe not really.  It will be interesting to see what happens between tomorrow and Thursday, when I go in again.  Back to the bi-weekly blood draws.

Nothing much else going on here.  Kev is still camping, but coming back some time today.  I think I have another week of ATRA.  Will be nice to get a couple of weeks off from taking it when I get that chance.    I have a nice fan blowing on me right now. Seems my thought has become somewhat freeform, which probably means it’s time to wrap up this entry.

Saturday And The Livin’ Is… Slightly Queasy

Posted by tokenhippygirl on July 31, 2010
Posted in: Family & Friends, Leukemia, Riley, Weston. Tagged: , , , . Leave a Comment

So here we are, day 8 from the first day of this last chemo round.  All in all I’m not feeling too bad.  Woke up well, but have felt a tad queasy since lunch.  Took the temp and it’s all good, no temperature, and that’s the biggie.

Karen ended up having to work today for awhile.  Got a call from her boss asking her if she and some of her team could rectify a huge issue in another department.  Not even Karen’s department, but they fixed the problem.  Once again, she steps in and gets it done.  That’s my girl.  Pretty amazing.

Right now she and pups are on their way to the vet to get some more heart worm med for the dogs.  They went along to get a little adventure.  She’s going to score a chai while she’s gone.  She deserves one.  As for me, I’m sitting here drinking green tea and watching HGTV.  It’s not a bad way to spend a Saturday afternoon.  :-)  Later, a much needed bath….  LOL  I’m finally done sweating out the poison.  Not longer the toxic avenger this time around.  Sheets washed, Weston can once again sleep with his mamma, and Karen can once again, sleep in the same room as me with the dogs. Back on her air mattress.  Yes, she’s been sleeping on an air mattress on the floor next to the bed since I came home on July 1.  Safer for her when I’m sweating it all out, better rest right now for both of us.  It’s not ideal, at all, but it works.  She is so amazing.  That girl knows how to love and take care of me.

Friday – Day Seven

Posted by tokenhippygirl on July 30, 2010
Posted in: Eats, Family & Friends. Tagged: , , , , , , . Leave a Comment

It’s been another day hanging at home and enjoying the company of great visitors. Stan, love you man.  It’s always so nice to sit down with you for a bit and chat.  I miss you and seeing you always makes me feel good.  Sean and Hayden… nice to see you guys as well.  It’s been a while and you two are so very sweet.

Right now Karen is at Dairy Queen getting us a couple of little Friday celebratory blizzards.  LOL  It’s been a long week and we are both glad it’s Friday.  I’m hanging in there.  Feeling a bit tired, but not bad, which is great.

We have no major plans for the weekend.  It’s about waiting to see what happens with me, etc.  We may just lay low and be quiet and enjoy being home.  That would be nice.  Knowing my honey though she will find loads of little projects around here. She is the true energizer bunny.  I can’t begin to say how much I appreciate and love her.

Back at Home and Loving It

Posted by tokenhippygirl on July 28, 2010
Posted in: Eats, Family & Friends, Leukemia. Tagged: , , , , , , , , . 3 comments

Here I am, here we are, back at home.  Good to be here.  Got up, after having slept really well, had my usual Cheerios with ATRA and some tea, took a shower to wash off the poison that’s now, once again, leaching out of me, watched some TV, Karen went to the store between her work meetings and came back and made me a great chicken caesar wrap for lunch (yum yum!), and I had another cup of tea, this time green.  Like I said… good day so far.

I’m not feeling too many effects yet from this round… yay.  My plan is to get on the treadmill in a bit and at least do a little walking.  Gotta try to keep that strength up and getting better as much as I can.

Love to everyone out there who is standing in my corner, sending me love, vibes, thoughts, blessings, and prayers.  I am bolstered, honored, so deeply touched, and amazed by the stellar group of people in my life.  Every day I think of you, and every day it lets me know how beautiful my life, and life in general, is.  Thank you.

Push Number 3 is History Folks

Posted by tokenhippygirl on July 26, 2010
Posted in: Eats, Family & Friends, Leukemia. Tagged: , , , , . 5 comments

Here we are…. day three.  It’s quarter to three and I’ve had breakfast and the morning ATRA, I took a shower, Karen has been working like a fiend with meeting and after meeting this morning (so nice though that she can work from here), we scored another ONC verizon internet portable modem for her so we can both be online for free (nice since last time she bought one and paid $50 for it… she thought she would have to do that again, but didn’t… yay!), I had the adventure of them trying to get another IV in, I got my third push, and have eaten lunch (ceaser chicken wrap, baked lays, peaches, and an iced tea).

The IV thing was, once again, a bit of a process.  One person tried twice and couldn’t get one in.  One in my hand blew, only not as badly as the one last week when I got my biopsy.  That IV nurse then called for reinforcements while they gave me an Atavan to try and help calm me and wrapped both my arms in very warm blankets and towels trying to get my veins to rise.  Wow.  Luckily the second lady had the touch and got a line in on her first attempt.  Whew.  The push went without incident except for a bit of a burning sensation.  Probably a bit too fast on the push, but at least the vein held.  One more to go and we are out of here in the afternoon tomorrow and back home for recovery.  If I hold true to form I won’t feel any real negative effects for nearly a week, if I feel any harsh ones at all.  I’m sure there will be something or another, but we’re hoping for not as bad.  Fingers and toes crossed and all good thoughts, wishes, and prayers coming my way accepted.  :-)  It’s going to feel good getting out of here tomorrow and going home.  After the inordinately long stay last time, it will be good to leave after only a few days, accomplishing our mission with expediency and all success.  After this only two more rounds to go. Woo Hoo!!

Day Two

Posted by tokenhippygirl on July 25, 2010
Posted in: Family & Friends, Leukemia. Tagged: , , , . 2 comments

Day two… We didn’t get more than four hours of sleep. A bummer. The adjustment and all of coming back into the hospital I think. Otherwise though it’s been a pretty good day.

The push was a little bit of an event. Nothing big really, just mostly my anxiety because the site was tender and Gracy didn’t get any blood return when she tried to flush it. I’ve had two sites blow out, and it’s painful when that happens. So my anxiety was such that I needed an Atavan to come down from it all. After trying with two flushes, putting a hot pack on my IV site (which was my left hand), and still not getting any pain or swelling we went ahead with the push. It worked, but like I said, the site was tender and ached through the process so my anxiety was high. If it blew with Ida I could have that toxic poison in my arm and that could’ve stared killing cells and such…. Scary to me. Luckily that didn’t happen, but afterwards Gracy removed that IV site. I will get a new one in the morning before my third push. I am such a tough IV for them. Deep veins that shrink up when I get tense and I get tense every time because of all the issues I’ve had. But hey, only two more to go this time around and I’ll get through it. They will get a good site in and I will get those pushes and get home on Tuesday afternoon after the last of them. That’s our plan anyway.

Otherwise it’s been a good day. Took a shower, watched a bunch of movies, Karen got to talk to Mary for an hour or hour and a half while she walked around the hospital grounds, I talked to Mom who called to check in from camping at Davis Lake, Kev came to visit and joined us for our mile walk doing laps around the unit and a trip to the cafeteria to get ice cream. Yum. I had left over Thai food for dinner, also yum!, and Karen had some mac and cheese from the cafeteria. She said it was a bit bland, but it was Ok.

A side note here…. I love my honey. So very much. She keeps me sane and grounded and constantly makes me feel cared for and loved. I am so very lucky. So lucky.

I haven’t had any nausea today. Yay! Though I didn’t last time either until about a week after I was done with the pushes so in all actuality if I do have any reactions they will probably happen some time after we get home. I might also need a transfusion or two since my numbers are going to fall again. Not sure if they will go as low as they were since it varies by patient. But it’s a real possibility that I might need at least one. They can do those at interstate on an outpatient basis or here at the hospital. We also don’t know if I’ll be neutropenic again or not. I’ll be getting regular blood draws so we will know what’s up with me. I’m also back on the Atra until August 7. It’s a complex and involved process, but it’s a process that’s getting me to that place of being past this and that makes it all totally worth it. Yes it does!

The Return of Ida

Posted by tokenhippygirl on July 24, 2010
Posted in: Family & Friends, Leukemia. Tagged: , , , . 1 comment

Ida is back. She was a caustic visitor last we saw her, though she promises to be gentler this time around. We shall see if she keeps her promise.

We are back in the hospital for consolidation round one. Karen’s air mattress is blown up, we walked what we think might be a mile around the oncology unit, I got my first push (without incident), and we walked down to the cafeteria for another round of chai for my honey and a decaf for me. Karen is going to walk over for Thai food for us tonight her in a couple of minutes. Yum. I couldn’t have it before, but I can now. Yay!