Leukemia

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.

 

Fear And Love in Illinois

Posted by tokenhippygirl on May 1, 2012
Posted in: Family & Friends, Leukemia, LiFe. Tagged: , , , , . 1 comment

Honesty.  Being honest.

I am afraid.  Not always, but I am.  I am trying not to be.

I capture moments of joy, soaking them up, appreciating them with every part of my being.  My honey doing something silly and wonderful and full of joy, which she does many times a day.  Her smile.  Sebastian’s laugh or new word. The gorgeous setting of the sun.  The pups loving on me in the way only they can.  Wind in the trees.  Music stirring my soul.  A film I love.  Hugs from family.  A visit from my Mom.  Art that aches to express itself and somehow understands me.  Kindness.  Moments of love from family and friends.  Hope.

And then I have those dark moments.  Afraid.  Scared.  Taken with a near paralyzing fear that maybe this time the blood results won’t be good.  Then they are, and I feel as though I can take another breath.  This is how it goes.

To be brutally honest I’m sitting here with tears streaming down my face.  Happy.  Yes, it’s that every other week Tuesday and I just got my results.  They were really good.  Of course they were, I don’t have leukemia anymore.  But…

It’s that word, that awful word… but.  I fear.  I have fear.  I am afraid.  Not all the time anymore, like I once was, but I am still afraid.

Sometimes I look at people I don’t know, which I did a lot this last weekend at Ebert Fest.  I look at the crowd, overhear conversations, get a peek into people’s lives.  I hear about work, and school, and giving, and politics, and passionate causes, and daily life.  And sometimes I think to myself, of course without really knowing any of these people, wow… you have no idea what you have.  You are walking around asleep.  And trust me when I say I don’t mean this as a derogatory thing.  I envy people who are sometimes asleep, or better described I guess as sleep walking.  They don’t know how fast life can change, and does.

Karen and I were talking the other day about this very thing.  How sometimes people are so caught up in things, stuff, the daily minutia of living, they forget.  They forget what it’s really about.  It is never about stuff, things, small arguments, disagreements, anger, what you have or don’t, what you want or don’t.  It’s about love and beauty.  Period.  Which I know I’ve talked about before here in this blog of mine.

Somehow I wish I could shout out to the world for people to wake up.  Wake to love and beauty and joy and each other.  Wake to sameness and togetherness and the simple joy that we are here in this day, with each other, looking at this lovely place we call home, wherever that is.  I want to shake people.

I don’t want to sound like I know something others don’t, but in this regard, I think I kinda do.  I’m grateful for the knowing, which I think I’ve had most of my life, and for the continued teaching life has brought me to even better and more fully understand.  I’m still learning.  I take nothing for granted.

I know all of this, appreciate it, and yet I am still afraid.  I still find myself holding my breath.  It gets better, is getting better, but some days, sometimes, it’s tough.  I want to see more of my share of sunsets, and laughing good friends.  I want to get more kisses from my grandson and from our puppies.  I want more hand holding and hugging and smiles.  I want more wind in my face and sun on my feet.  I want more.  I want.  The wanting is a very hard thing to admit out loud.  But it’s there, every time I get worried.  Every time I am afraid.  I want because I am loved and I love so deeply.

 

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!

ATRA Be Gone… For Now

Posted by tokenhippygirl on February 3, 2011
Posted in: Leukemia, 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.  :-)

Getting Ready for England

Posted by tokenhippygirl on December 8, 2010
Posted in: Family & Friends, Leukemia, Travel. Tagged: , , , , . 5 comments

Just got a call from my doc’s office with the numbers from the blood draw yesterday.  All were really good, except my white count was 3.2.  That number isn’t bad at all in and of itself, but it puts it in the range where my maintenance dose is reduced to half.  This has happened a couple of times before, which is why my blood is monitored every week… if my white count falls into a certain range it’s an automatic reduction.  Anyway…. my doc has decided to leave me at the half dose during the time I’m in England, since this reduction in white count has happened before.  This makes it easier for us while we are there so we don’t have to worry about whether the counts are over that reduction edge.  The protocol calls for reduction to half anyway if this happens a few times.  My guess though is that when we return he will probably increase me to the full dose again.  I’ll also be on another 15 day round of ATRA starting the day after we get back.  But that’s then… for now we are getting it all ready.  We will go in today so I can get the shot and also will be picking up all the meds (the shot meds for the month, enough pills for the month, and then refills of other meds for me to take in case I need them… ambien, etc.).

I’m starting to get excited….. we are actually going to be able to go.  I’m actually going to be able to go!!!  Woo Hoo!!!  I’m crying right now… life is so beautiful!!

Maintaining

Posted by tokenhippygirl on November 24, 2010
Posted in: Family & Friends, Leukemia, The U.K., Travel. Tagged: , , , , , , , . 3 comments

Getting the maintenance phase of this all worked out is… happening.  Had to go in again today (had the CBC yesterday) for another blood test (one of my liver function tests were high from last week and my doc, who is the hospital doc this week, didn’t get it ordered before we went in yesterday).  No biggie.  Just another slip sliding adventure coming back up our driveway.  Have to go in again today to get my shot.  The results of all of this tweaking of my maintenance (my doc lowered my shot dose to half last week as well as my pills from two to one after getting my blood work back last week and finding my white count wasn’t quite as high as he’d hoped)… I will, from now on, be on the half dose amount of both shot and pills.  They will not be raised back up.  The protocol calls for starting at the high dose and if the counts don’t go too low, staying at that dose, but if the counts don’t maintain well enough at the high dose it should be lowered to the half dose amount, which is what seems to work in my case.  My liver test from today also improved with the lower doses so the doc and all feel this is the dose for me.  We will see next week.  We’re hoping to get all this stable in the next couple of weeks… before we fly to England to see the kids and our grand boy, Sebastian.  I can’t wait to meet him!

To clear all this up…  I am now on half the shot amount and one pill a day.  Then, every three months, I take another 15 days of ATRA along with the continued weekly shot and daily pill.  The only thing left to finish working out is getting it squared away  with an oncology department in England to give me my shot every week while we are there.  Four shots in total.  Karen called and talked to them to start the process and got the contact info for my doc to call them.  Kaiser is going to package my shot meds so that Karen and I can carry them to England.  Karen talked to the TSA to make sure we had what we needed from the doc, paperwork wise, etc., to get through security.  So after my doc talks to the doc there we should, hopefully, be good to go.  Yay!!!

I’m not looking forward to the long hours of travel… we fly to Chicago from Portland then from Chicago to Manchester, England.  O’Hare is a bummer of an airport.  Busy, no good services (internet, etc.), and weather effected this time of year.  But hey, we’ve flown through there many a time so we are familiar with it and know how to deal with it well.  We are definitely seasoned travelers.  We make ourselves laugh we are so efficient….  Get to the airport, check bags, go toward security, stop to take off watches, put cell phones in the backpack, get to security and take out computers and take off shoes in line, go through the line… get some food for the plane, get on the plane, get out Bose headphones and laptop for movies if movies on plane aren’t any good and also iPod in case music is the thing, eat our previously purchased food, get to O’Hare, find some floor space in a terminal hallway near an outlet (they don’t have areas with plugins for computers, etc…. part of it being a bummer), plug in and put in a movie or two depending on amount of time, get on the plane to Manchester, repeat all plane activities mentioned before, get off the plane, bags, customs, train to Lancaster, stay up to what is a reasonable evening hour in Lancaster to combat the jet lag, and then crash for like 13 hours.  And that, ladies and gents, is how it’s done. It’s going to be a tiring long day, but it’s so worth it… and always kind of exciting.  I might say it’s tiring, but it’s also sort of fun while it’s all happening.

For now we have tiny bits of snow coming down and we leave in another hour and half to go back in to the clinic.  Tomorrow…  Thanksgiving and really taking time to be joyful and thankful.  As I said in an email to some of my family the other day… to quote myself…

I am thankful every day for the day itself, for my beautiful family loving me and me loving them back, for my friends who also love me greatly and who I love as well, and for the wonder and joy I feel just looking at the world around me.  It’s a glorious beautiful thing, this life.  So thank you both for the Thanksgiving dedication… I think Thanksgiving has, this year and moving forward, become my favorite holiday.  What better reason to have a day of celebration… to stop, pause, and be thankful and grateful in a very conscious way.

Happy early Thanksgiving everyone…

 

Letting Out A Breath

Posted by tokenhippygirl on November 18, 2010
Posted in: Family & Friends, Leukemia. Tagged: , , , , , . 4 comments

I’ve been holding my breath for what seems like a lifetime.  Moments of being so very afraid, but not letting myself think about it.  So scared sometimes.  When something like this happens to you you fight that all the time.  I am, as all who know me would probably attest to, a positive person.  I think positively, I act positively, I smile all the damn time.  It’s who I am.  I have been that person through this process so far and will continue to be I would imagine.  But there have been times… thinking what might happen, what could happen.  Dark moments.  I didn’t let them get the best of me and always managed to push them back and away… but there has been a sort of hum inside.  A holding of my breath.

With each treatment round I’ve kept the attitude, this is killing it, this is curing me.  I kept thinking that, even in the beginning when I was most sick… and subsequently, every time after another round of chemo when I didn’t feel good or couldn’t go anywhere because I was neutropenic.  I kept saying… this sucks now, but it’s killing it, it’s taking care of me.

And you know what?  Today I got the best news of my life…. right up there with when my Mom got past her bought with breast cancer and when Karen told me she loved me for the first and all the times after, and when we sat on that beach in Hawaii making a commitment to each other, and when Mary told us she was pregnant, and when I presided over Mary and Martin’s wedding.  Those, some of the very best moments of my life, were joined by the news today that the molecular scan of the bone marrow biopsy I had two weeks ago, results just back, showed no abnormality.  None.  There was no sign of leukemia in my marrow, in my chromosomes, in me.  It was totally clear.

I just spent the last half an hour crying on and off, and will probably be the rest of the day.  I called Karen immediately (she’s traveling for work) and cried with her on the phone.  She thought, initially, something was wrong because I was crying so hard I could barely speak.  I called my Mom and I called my brother… same thing… crying so hard.  Crying out of happiness.  Crying, and finally… letting out a little breath.

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!

Stopping For Bullies

Posted by tokenhippygirl on October 16, 2010
Posted in: Family & Friends, Leukemia, Riley, Weston. Tagged: , . Leave a Comment

On our way home from a family dinner at Mom and Don’s place. Stopped at the pet store on the way home for bully sticks for the pups. They love them.

Dinner was so good. Got to see family I haven’t seen in a long long time. Nice! Nothing like being in a room with a bunch of people I love and who love me. It’s what life is about.

Had my appointment with Dr. Bigler yesterday. I start maintenance this coming Wednesday. My numbers are holding steady. Not all quite in the normal range yet, but good enough. I do have to have another bone marrow biopsy… It’s looking like maybe November 3 for that. Then it’s just two years of the maintenance cycle and I will be done with the meds. Maintenance involves a weekly shot, a daily pill (or maybe two… We don’t know yet how much as they have to do a formula for it) and 15 days of ATRA every three months). I should be able to get into a pretty normal routine and back to a pretty normal life. Next Wednesday….. Here we go…..

Now, home to the pups with bullies. They will be so happy.

My Honey, My Strength

Posted by tokenhippygirl on October 8, 2010
Posted in: Family & Friends, Leukemia. Tagged: , , , . 3 comments

My honey is my strength.  I’ve known this for a long time.  I don’t want to say I don’t have my own strength, I do.  I have tons of it.  But somehow I feel stronger with her around.  I feel like more is possible and that I can do things I didn’t think I could, or I was afraid to do.  I don’t know.

Since this whole thing happened to us (because it definitely didn’t just happen to me) I have not been myself completely.  I, as I said before, get panic attacks now.  For anyone who knows me this would be very surprising since I was (and will be again) the most mellow of people.  Very laid back.   Now, out of the blue, I get these moments of anxiety and panic.  Weird.

This brings me to today.  My sweetie decided that I needed to get out of the house.  She has decided I need to get out of the house a lot more than I have.  She’s right.  So today we decided to go for a drive, but as the time approached for us to leave I started to get wonky.  Which is what I call it… getting wonky.  I started sweating, my heart started racing, I felt like I couldn’t breathe, felt like my throat was closing… the whole nine yards.  I got testy and worried and a bit freaked out.  My honey kept talking to me, telling me I could do it, and we ended up getting teas and then driving around Sauvie Island.  I was fine by the time we actually got to the island.  It was a very good thing for me, and she knew it.  At one point I felt like I couldn’t do it, but she knew I could.  She’s my strength now… until I fully get my own back.

On another note, but sort of the same…. many of my friends have had family members diagnosed recently, and some not so recently, with cancer.  One of those friends lost a family member today.  My word to the universe, through this blog, is give what you can to research.  It’s the way through this terrible thing called cancer.  Much love to my friend and her family as they mourn and then celebrate a beautiful life lost, and to my other friend and his family as they start down the road and begin the fight.

 

Sunday… After Blood

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

Here we are, my sweetie and I (and the pups), hanging at the house today.  Karen woke up at 5:30 and couldn’t go back to sleep (still on England time I think), so she got up.  Luckily we went to bed so early and she went to sleep pretty early so she actually got enough sleep.  It’s seemed like a long day, especially for her, so it’s been really nice.

Yesterday we spent several hours at the infusion center while I got a transfusion.  At least there was a TV in the room, plus we got to talk to each other, in person.  So nice. The only faux pas of the day happened just as we were leaving.  She was pushing me out in the wheel chair when I asked her to look at my neck, which felt hot and itchy.  She did and then we got the nurse and he said… looks like hives, back to your room for you.  They put in another IV and gave me some IV Benadryl and then had us stay for another hour or so to watch me to make sure I didn’t have any other issues and that the hives went away.  They did.  We all didn’t know if it was a reaction to one of the bags of blood, or if it was unrelated, but it was better to be safe than sorry.

We got home last night and at one point a bat started flying around in the family room.  Kev opened up the door and eventually it flew outside.  We have no clue how it got in.  Must have come in through a door at some point, though we don’t make it a habit of leaving the doors open at night very much.  I personally think it just sensed that there was another blood sucker in the house and it wanted to commune with it’s peeps.

So, back to today… mellow.  Nice.

I have a blood draw tomorrow.  Hopefully the numbers start coming up.  It will be day 19 of my cycle, so there you have it.  We’ll see what’s up.  I do feel a little stronger today after getting the blood yesterday.  That part is nice.  I left the infusion center saying I hopefully wouldn’t be back.  They said… well, the last chemo treatment is usually the hardest on the numbers and the body, so you may be back.  I say… one day at a time.

For now my honey is making dinner, Weston is sitting next to me on the sofa chewing on a bully, the little girlie is in the kitchen with Karen, and I’m watching the Next Iron Chef.  I’m so addicted to these competition cooking shows.  Who knew…

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….

4 Down

Posted by tokenhippygirl on September 22, 2010
Posted in: Eats, Family & Friends, Leukemia. Tagged: , , , , , , , , . 4 comments

Had a kind of hard day today.  Just not feeling well.  It’s day 7 of my cycle.  I made the mistake of getting up and taking a bath, and then shower to rinse off, right away.  I should know better.  I need sustenance before I do anything when I’m going through this.  No energy before food.  So by the time I was out of the shower I had to lay down immediately so I didn’t throw up or pass out.  Not fun.  I managed to get through that, but it has informed my entire day.  Nauseated on and off all day.  I’ll get through it.

In other nice news though… Karen booked her return flight.  She is coming home on Friday, October 1, at 1:15.  I miss her terribly so knowing that she will be home in 9 days is the best gift I could get… even though she sent me another birthday present today.  First she gets me a wonderful new watch that I can set two times on so that I will always know what time it is in England while she’s there (she’s a great gift giver!), and then today I get a Kindle.  Yep… she got me a Kindle.  So cool.  I’ve talked about getting one, for traveling mostly, and so she got me one.  It won’t always replace books, which I love, but it will definitely be cool to have.  I love that woman of mine.  She’s the best… and I mean that.  I don’t say it lightly.  She knows me, and loves me for me.  What more can you want in a split apart?

Otherwise… Mom gave me my fourth shot today.  I have to move them around and so this time it was in the arm.  I can’t really reach to do it properly myself in that spot so Mom volunteered.  I told her I would do it in my leg again, but she wanted to help out.  So there it is.  4 down… 4 to go.

Now… time to watch Bravo’s Top Chef Just Desserts.  I’m addicted.

Laying On The Couch

Posted by tokenhippygirl on September 21, 2010
Posted in: Family & Friends, Leukemia. Tagged: , . Leave a Comment

Neupogen… the med of the week.  I’ve done two injections so far.  Not bad really.  Mom hangs with me for support.  Hopefully it works and I avoid the neutropenic fever and the hospital.

Otherwise…. I talk to Karen a couple of times a day, sometimes getting to hear Sebastian cooing while he’s sleeping on grandma, like this morning.

Mom has been wonderful and fantastic!  I love her so much!

First Push, Last Round

Posted by tokenhippygirl on September 16, 2010
Posted in: Eats, Leukemia. Tagged: , , , , , . 1 comment

We went in today for the first of two pushes in my last consolidation round.  Had to be there at 8:00 this morning, which is tough for a girl who is used to getting up some time between 8:00 and 9:00, but I did it.  Drove in, had the blood draw at 8:00, killed some time for an hour and a half until my appointment with Dr. Bigler at 9:30, he looked me over and the numbers over, said everything was good to go, and we then went over to the chemo area.  I had to wait there for an hour before getting in.  Finally we walked back and I got an IV in… tough, but not too bad, and the saline started.  I then got my pre-meds (some stuff to help me not get nauseas) and about a half an hour later, the push started.  The nurse was great… she pushed a bit slow, making sure it was nice a diluted as it went in (trying to prevent the phlebitis I’ve gotten the last couple of rounds) and then it rinsed through with saline and we were out of there.  I was starving by then… it had been a long time since the morning cheerios, so we went down to the cafeteria in the central office (convenient) and each had a sandwich.  Then home…. Which is the best.  I got to come home.  No hospital stay to get this done.  Just the push… then home.  Nice.  And for dinner tonight?  A salad with chicken, parmesan, eggs, peppers, tomatoes, and blue cheese dressing.  Not to mention a nice piece of toast to go along with it.   I was not neutropenic this morning when my blood draw happened, and we are assuming I am still not neutropenic for at least today and tomorrow.  Probably not until Monday at the earliest… though something we’ve  definitely learned is that each consolidation round is different than the last.  We’re hoping no fevers, no hospitals, no transfusions.  Just a decline during the nadir and then a rise to October 15 and my meeting and start of the maintenance round.  For now though… home sweet home.  It’s nice.

The changes… I got a bit less chemo (they reconfigured because I’m now on outpatient status, based on weight and height… and since I’ve lost 40 pounds the amounts were less) and they also reconfigured the amount of ATRA I’m getting… 9 pills a day instead of 10.  I start that again tonight.  One other thing… I’ll be giving myself a shot every day for a bit starting on Saturday.  It’s called Neupogen… it’s supposed to help my white blood cells recover faster.  My doc is trying to avoid me getting another neutropenic fever.  The shots didn’t seem that bad as I was practicing on a little thing at the chemo center.  We’ll see how it goes as I give them to myself.  I might have to talk Mom into giving me some of them.  We’ll see how it goes.  I don’t know how long I’ll have to do it… probably at least 7 days… but it’s based on my numbers, which the pharmacist (as well as my case manager as usual) will follow them. I might have to go in three days a week instead of the two during this time, we shall see.  Nancy told me to tell the pharmacist that I am already getting my blood draws twice a week.  Maybe that will be good enough… if not, I won’t be doing this too long (hopefully) so it won’t be too bad.  We will do what I have to… as always.  I got refills of zofran (anti nausea med) and a refill on the Ativan ( I was running low). I also got a medicated lozenge for the thrush I’m having after the antibiotics I got in the hospital.  Something I’ve learned with this is that there’s always some little thing.  Part of the process… but hey… we are moving through it.

Taking it day by day… and tomorrow… the last push, which just happens to coincide with my 45th birthday. Two things to celebrate in one day.

Neutropenic No More

Posted by tokenhippygirl on September 13, 2010
Posted in: Family & Friends, Leukemia. Tagged: , , , , , , . Leave a Comment

It’s a good day.  Had a follow up ultrasound to check on the blood clots in my arm and hand and they are no longer there… yay!  Also had blood work done today, normal Monday thing, and just found out I am no longer neutropenic.  My platelets are up, and the other things are still low, but almost normal.  They probably will be by Thursday.  I’m happy I get to be a normal person for a few days.  No masks, no worrying about germs and dirt and fungus,etc.  I think we will go out, do something.  Mom and I are talking about going down to her house tomorrow.  She hasn’t been there in a couple of weeks, so it would be nice for her… and nice for me to go down there too.  I haven’t been to Mom and Don’s place since before all this started.  Would love to see all they’ve done this summer.  It’s been a lot.

Since my numbers are pretty good, and will probably be even better on Thursday, it looks like I will get my first of my last two pushes on Thursday, outpatient.  My last push will be on Friday.  Yes it’s my birthday, but then that gives me two things to celebrate… turning 45 and the fact that I just had my last push.  Yay!!!

In baby news… he’s a tad fussy.  Not much of a sleeper yet, which is keeping the kids and Karen on their toes. It will get better though… it’s the usual no sleep for the new parents and grandparent thing going on.  I feel for them.  They all look and sound tired, but he’s adorable.  So beautiful.  They will all get through this with flying colors and soon everyone will be getting more sleep.  I have confidence in them. Plus, I’m sending all the love I can their way… that’s gotta help… right?

Ok… well…  I’m going to finish watching the US Open men’s final, which I recorded on the dvr while we were in at the clinic.  No one tell me who won.  I’m excited to finish watching this match!

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.

Tired, But Plugging Along

Posted by tokenhippygirl on September 4, 2010
Posted in: Eats, Family & Friends, Leukemia. Tagged: , , , , , , , . Leave a Comment

Saturday and another day watching the US Open. Currently my most recent round of antibiotics (every six hours like clock work) is pumping into my vein. I’m blogging one handed on my iPhone with the WordPress App.

Mom is down getting some lunch for herself. I just ordered mine…. Chicken noodle soup, crackers, and some orange sherbet. My mouth is very sore. Makes it hard to eat. I’ve managed to get something down every meal, but I can guarantee there will be more weight loss after this visit.

Took a shower today. Took a lot out of me and I felt exhausted and nauseas for a while after. It’s what happens when the red blood counts get low. They aren’t quite low enough to transfuse me, but the are low. I have that pale look again too. Ah well… We know this will pass. Time for everyone to do the chant for rising counts. I’m in the nadir. The low point. The only thing that went up was my platelet number…. From 47 to 53. A good sign of things possibly wanting to trend up? We don’t know. The hematocrit number went down again from 27 to 25 point something.

Talked to my honey… I love that woman!

For now I’m going to eat my soup. :-)

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!

Winging Her Way to England

Posted by tokenhippygirl on September 1, 2010
Posted in: Family & Friends, Leukemia, The U.K., Travel. Tagged: , , , , . Leave a Comment

Mom got here yesterday and then took Karen to the airport this morning.

I didn’t blog yesterday… I haven’t been feeling that well.  Probably a combo of things… I’m stressed about Karen leaving, and I have been running a low grade fever on and off since yesterday.  We contacted the powers that be at oncology and heard that unless my fever gets to 101 we shouldn’t panic.  I don’t really have any other symptoms.  I feel tired, a bit worn down, but then again I didn’t sleep great last night… checking my temp every time I got up to go to the bathroom.  It made it up to 100.5 at one point, but then went down from there.  If it does hit 101 I will probably have to go back into the hospital for antibiotics and other tests to make sure I’m OK.  We are hoping that doesn’t happen.  The nice thing is that my oncology office called today to check on me.  Asked Karen a bunch of questions about me.  Like I said… no real other symptoms… other than tiredness.   I feel like I’m getting great care from them.  It’s awesome.  It will be interesting to see what my blood work looks like tomorrow.  Mom and I will probably go in in the morning, just to get in there and get it done so we can know earlier about what’s what.  I’m hoping my RBCs and platelets are fairly stable and that my WBCs and neutrophils, if not up, are at least stable.  Hoping for them to rise in the next week or so.   Wouldn’t it be great to not be neutropenic for a week or more before I have to go back into the hospital for the next round?  Yes… yes it would.

So, I have avoided talking about Karen leaving… which I mentioned earlier.  I am really glad she is going to be with Mary, Martin, and the baby.  It will be wonderful for her to be there for the birth of our first grandchild and to help Mary… and Martin… through it.  It’s a good thing.  I just miss her already.  We have not been separated for more than a week since we’ve met.  This is going to be strange.  Good thing I have my momma here with me.  She will take good care of me (which makes Karen feel better… and me), and be great company in the absence of my honey.  Karen and I plan on skyping every day and talking on the phone as well.  It will work out.  It will be OK.  And before you know it we will have a new bouncing grand baby and Karen will be winging her way back to me.  :-)  It will go fast.