Back at Home and Loving It

July 28, 2010 tokenhippygirl 2 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.

Sprung…. Day Four

July 27, 2010 tokenhippygirl 3 comments

Karen and I got sprung from the hospital today, not long after my last push was completed.  We just got a call from Nancy letting us know what my blood counts were from yesterdays draw.  They only drew me once while we were there and those numbers are stable and still up.  Nancy told us we could skip the draw this Thursday and wait until Monday to start the whole bi-weekly blood draw that I will still be on.  Mondays and Thursdays, like clockwork.  Nice to have a bit of time off though.

So between now and August 20, when I have my next appointment with Dr. Bigler and then possible entry into the hospital again for round three on August 21, we just watch the numbers, see what happens, take precautions again for neutropenia, and see if I have to go in for any transfusions or saline drips.  The biggie is fever, so let’s all hope that doesn’t happen.  If it does I have to go back into the hospital for IV antibiotics.  We were told, and are hoping it’s true, that this time around will be easier on me.  Each round is supposed to be a bit better, let’s keep our fingers crossed.  I know I will feel fatigued and run down again, and I will probably lose even more of my hair (who really cares about that, I’m lookin’ good bald!  LOL), and I may be occasionally nauseas or get a bit of diahrrea.  As long as it’s not too bad and there is no fever to go along with it, we will be able to manage me here.  And again, that’s what we are hoping for.  We were told my numbers should drop after 5-10 days after my first push.  That puts the start of the decline anywhere between tomorrow and probably some time this weekend.  I don’t know how long they will stay down before rising again, it’s sort of a personal thing, related to me and how I respond.  I guess we shall see.

For now here I am, back in the family room.  I’m tired from the nights in the hospital where a person can’t get more than a few hours of sleep without interruption.  It will be nice for both Karen and I to be sleeping back at home again.  Me in the bed and she on the air mattress next to the bed (I am currently sweating chemo and very toxic so there is no close proximity allowed… not safe for her).  Still, we will both sleep better here.  We just do.  It’s home.

One nice thing… we missed the major heat wave.  There are blessings in every situation.  That was one of ours being in the hospital during the big hot weather.

Now… I’m watching some Dateline thing we DVR’d and my honey is taking a shower.  She just cleaned the house, including cleaning the fresh veggies and fruits out of the fridge and moving the potatoes into the shop, and freezing the blueberries. Getting ready for that neutropenic stage again.  We did this before, so I’m not too worried about it, we know what to do.  I may not even become neutropenic, but the doc said it would probably happen, just not for as long as I was before.  Yay!

Right now I’m just enjoying the fans blowing on me and being home again.  Love it….

Push Number 3 is History Folks

July 26, 2010 tokenhippygirl 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

July 25, 2010 tokenhippygirl 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

July 24, 2010 tokenhippygirl 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!

Consolidation… Round 1

July 23, 2010 tokenhippygirl 3 comments

We went in and met with my oncologist today.  It went really well.  We aren’t messing around starting the consolidation round, I go into the hospital tomorrow, a day we chose.  I have to be there at 8:00 a.m. at admitting and then I’m back on the oncology floor for 4 days, if everything goes well.  If it does then I will probably be coming home Tuesday after the last of my four chemo pushes.  After that it’s watching for fever, getting my blood drawn at least twice a week to see what my counts are, and taking the ATRA again for 15 days.  I’ve been off the ATRA since Wednesday afternoon.  A mini break.  LOL  I start back up tomorrow when I go in.  It will be like old home week.  When Nancy called to make sure I could go in tomorrow the charge nurse remembered me.  We are going to pack up our stuff tonight, including my honey’s air mattress, and head out of here about 7:00.  I had to have blood drawn today, even though I had it drawn yesterday, so that it would be within a certain time frame for my going in tomorrow.  The cool thing is that my oncologist is the oncologist covering the hospital starting tomorrow, so he will be there when I am.  It’s one of the reasons we decided to go ahead and start this so soon.  Another reason was that we wanted to start on the weekend so Karen wouldn’t have to worry about working for a couple of days.  Makes it easier on her, which is a good thing.  :-)

So folks… round two… here we go…

Finally… a Farmer’s Market Success

July 22, 2010 tokenhippygirl 2 comments

Today has been a good day.  Soak in the hot tub, shower, a visit from Mom (she came so she could go to the oncologist appointment tomorrow with us), a trip into the city to do my bi-weekly blood draw, and a stop at the Farmer’s Market on 23rd.  It was great to wander around the market. Bought a couple of cookies and ate them, we got some fresh veggies for dinner tonight, and just enjoyed the market and the weather.  It’s not a huge one, but it had a great variety of stuff.  The perfect little stop and outing for us.  Really nice.

We got home a bit ago.  I walked 30 minutes on the treadmill and Mom and Karen both worked out in our mini gym in the shop.  Now they are in making dinner.  We are going vegetarian tonight.  Veggie noodles with spaghetti sauce, salad with tomatoes, walnuts, and a bleu cheese we bought at the market, plus green beans (also from the market), and broccoli.  Sounds really tasty to me, and is smelling great.

Tomorrow is the appointment with my oncologist.  We will, I know, get some answers about the time frame and what’s up with the consolidation rounds.  I’m actually happy to go meet with him.  Get those questions answered.

The Day After

Here I am, still sitting in the family room, but things have changed.  I feel myself starting to relax (a soak in the hot tub this afternoon helped that a bit).  I’m still tense, and think that the tension will take a while to fully leave me, but it’s starting to ease.  I walked on the treadmill for 25 minutes this morning and will do another round on it this evening as well.  I got some good sleep last night and felt much better today… more energy.  Granted, I could, possibly and maybe… ya think?, feel better today because of the great news we got yesterday.  That is still sinking in.  Remission…. wow.

REMISSION!!!

July 19, 2010 tokenhippygirl 5 comments

I just got the phone call from my chemotherapy case manager.  My marrow shows no signs of leukemia.  I am now in remission!!!  Karen was out in the shop on the exercise bike when the call came in.  Kev was in the family room with me.  He went out and tried to get Karen to come in without telling her.  I went out there immediately after getting off the call and was crying.  She thought something was wrong until I told her it was good news.  I told her I was in remission and we just hugged and hugged and cried and cried.  It was great news after having a rough day.

I had been not feeling great today.  I didn’t sleep well and I’ve had this pain in my back and side for a couple of days.  It started worrying me so I called the advice nurse.  This was on our way home from my bi-weekly blood work.  We got home, still hadn’t heard back from the nurse, and Nancy called with my blood work results. They were good, all in the normal range.  My ATRA hadn’t been refilled so she said she would call back with some news on that after talking to my oncologist. Meanwhile I told her what was up with me calling the advice nurse and she transferred me to the oncology advice nurse who told me to ice my back and side and I could talk to Dr. Bigler about it at the appointment on Friday (this appointment has been set up for a couple of weeks), unless my back gets worse.    Then I waited for Nancy to call back about the ATRA.  She did, but she also called about the REMISSION!!!  The ATRA was a side note.  I will stop taking it after I run out, which will be Thursday morning.  I will be on it again, but it will be on shorter cycles, connected with the consolidation rounds.

Consolidation rounds…. I meet with my oncologist, Dr. Bigler, on Friday to talk about them.  The consolidation rounds are like, as Karen’s brother Don put it, mopping the floor.  I have to do three more rounds of chemotherapy.  Not as strong as the first, but three more rounds none the less.  The first of these rounds will be, we think, in the next week or two.  I will go back into the hospital and get about half the dose of chemo I got before, only this time I get it for four days in a row.  One push every day.  They say it isn’t as hard on you as the first round.  I’m counting on that. These rounds are basically to make sure there wasn’t one little cell in there hanging out.  There was none in the biopsy, which means I am in remission.  These rounds, the consolidation rounds, are to make sure I stay there.  When they are done, and I don’t know if I will have to have another biopsy, but the deal is… when I am done with these rounds I will be cured.  Yes folks, cured.  And I think I will leave it at that… except for to say…  REMISSION!!

Saturday’s Follies… and Successes

July 17, 2010 tokenhippygirl 2 comments

So today we decided we would go in and go to the farmer’s market near PSU.  We drove in, finally found parking, and then, after we bought parking of course, started to walk to the market.  We got about half a block and were pretty darn cold.  It hadn’t warmed up yet today and we decided it was too cold to go, especially with the chilly wind that was blowing.  Then we decided to go to Buffalo Wild Wings to satisfy Karen’s craving for Asian spiced wings.  We were there for like a half an hour and I wasn’t feeling great… a bit of anxiety and some nausea (I get little bits of it now and then)… bad timing.  We got our stuff to go and headed home.  We got home, I had some lunch (I’d had only one and a half mozzerrella sticks at the wings place) and Karen had her wings.  We then decided to go to the park, take the dogs for a walk, etc.  In mid drive we changed our minds and went to the CZ Trail.  We walked not very far at all when we heard gun shots.  Seems someone was shooting very close to the trail.  We didn’t much like it so we turned around and went back to the car.  It was probably a 10 minute walk.  We did end up topping off that outing with a stop at the fruit stand.  Karen scored some corn, the first of the year, and ended up having some for dinner.  That made the day.

The success you ask?  Other than the corn of course.  I ended up going for a walk anyway… on the treadmill.  Went for 25 minutes.  Not bad.  Now I just need to do that a couple of times each day, increasing the length of time and the difficulty. Building up that strength I’m supposed to be building up.

Categories: Family, Food, My LiFe, leukemia

If It’s Not One Thing

July 16, 2010 tokenhippygirl 1 comment

Just got back from the lab and the pharmacy. Seems my fasting cholesterol test yesterday, the one I had along with the usual tests, revealed high cholesterol and a triglyceride level five times the highest healthy level. Not great. I haven’t been on my cholesterol meds since the day before I went into the hospital. The end result? A new prescription and blood tests to check my pancreas. We shall see. It was a bit of a journey to get here today… I won’t go into calls with the oncologist on call (mine wasn’t available) and then calls to the my doctor’s office, etc. Needless to say…sort of a stressful and eventful day.

Still no news about the bone marrow biopsy. As I think I already said, if nothing else we will find out in the 23rd.

And now it’s the weekend. Yay! We have a few things we’d like to do. All dependent on how I feel, but it would be nice to get out a bit.

We are currently driving along highway 30, after stopping at New Seasons and Nature’s Pet over in Tanasbourne after we went to the Sunset Clinic. “Bobby McGee” playing on the radio and it’s beautiful out. My honey is driving and nodding her head in time to the music. Gotta love her.

Numbers are Good

July 15, 2010 tokenhippygirl 1 comment

Well… I had my bi-weekly blood draw today, Mom drove me in the this morning with a stop at Starbucks on the way home so we could get our drinks and a chai for my honey, and just got the results.  Seems all my numbers are now in the normal range.  Yes folks… I said normal range.  This is a good thing.  They have gone up every time.  I can hardly believe it considering where they were when I started this journey.

We are still waiting for the bone marrow biopsy results.  Those will tell us where I’m at and what the next step is.  They didn’t have them back yet, today.  Nancy said they would call when the results were in.  If nothing else we have an appointment next Friday with my oncologist again to talk about them so we will at least know by then.

It’s been a pretty good day.  My biopsy site is sore, but not terrible.  It’s stayed pretty cool in the family room, and Mom and Karen make great company.  Mom took the dogs for a walk today, which I’m sure they loved, and is going to finish staining the rest of the deck (two sets of steps) tonight.

Karen and I talked about going to the farmer’s market this weekend.  Nancy asked what kind of walking around I’ve done and I need to do more, so we are going to work on it.  I walk around the house, but it’s been too hot for me to go out during the day.  I think this weekend it’s supposed to be a bit cooler.  Even if it’s not, the farmer’s market is mostly in the shade anyway, so it shouldn’t be a problem.  We’ll see.  It’s still one day at a time around here.  Today… it was a good day.

Categories: Family, My LiFe, leukemia Tags:

Ice Bags Are My Friend

July 14, 2010 tokenhippygirl 2 comments

It’s Wednesday.  Today I hung out at home, ice bag on my hip since 4:00 today.  The bone marrow biopsy site isn’t that painful, just a bit swollen and a tad sore.

I hung out with Mom most of the day.  Karen had to go into the city for a training this afternoon, so Mom stayed home with me, cleaning and shaving my head again and weeding and going to the store for a few things.  She’s also taking me in for my bi-weekly blood test in the morning. Mom is a rock star… one of a kind.  I love her very much.  Thanks Mom… again.

Now Karen is in making dinner for the pups after working out and Mom and Kev are out in the shop working out.  It’s tag team around here.  Karen and Kev went out, Mom made dinner for me then went out, Karen came back in, and Mom and Kev are still out there.

Kind of mellow here…. it’s nice.

Bone Marrow… Check

July 13, 2010 tokenhippygirl 2 comments

Well today was THE day folks.  The biopsy is done.  I’ve had, over the last few days, increasing levels of anxiety waiting waiting waiting for this day.  Building up, making me so tense I can’t even tell you.  This morning I was doing deep breathing exercises almost constantly.

We went into Sunnyside Hospital at one, checking in and getting sent down to the MPU unit.  MPU… something procedure unit.  Can’t remember now.  I got escorted in, Karen and Mom coming along to keep me company while I changed into the very short gown they provided.  Very short.  Thank goodness they gave me a blanket.  I laid down on a small bed and then the nurse tried to put in an IV to give me the pre-meds.  Then she tried again, different spot, after she blew the first one and put some saline into my arm (it’s still swollen since the saline has not absorbed into my body).  Not comfy. Then she gave up and brought in another nurse.  She tried one spot in my hand… didn’t work.  Then she went for the baby sized needle to use in a small vein in my hand.  That, finally after four attempts, worked.  I am a hard person to put an IV in.  It’s difficult and my veins often blow out.  But, finally… victory!  I was glad since that port was where the pre-meds were going to go in.

The pathologist and lab assistant get there, get consent, and in go the meds.  Ah…  Atavan (like valium… sort of) and morphine.  I felt them immediately.  The pathologist asked me to flip over and here we go.  She goes for the same spot as last time, pressing down really hard on my hip trying to find a good spot.  She marks it, puts in the local med, gets the needle, and goes in.  I realized, this time, that the pain mostly comes from all the hitting of nerves.  Despite the meds, I feel this.  It’s not fun.  At one point my leg on that same side moved when she hit a certain nerve.  She put in more of the local med.  My tally for the local was three by the time we were done.  She then realized her needle was too short and she had to go for a longer one, starting the process again.  She finally found the bone and then the screwing in started.  She got to the liquid marrow, aspirating it after counting with me to three (she did this because it’s a painful little endeavor, aspirating the liquid marrow), and then kept screwing in to try to get to the core.  She thought she got there and unscrewed it only to realized she’d gotten a clot of marrow (which they still can use). She kept that clot, and then tried again for the core, using whatever tool that is that screws into the bone.  She couldn’t get there.  Good thing the liquid marrow and the clot were good enough.  I was ready to be done.  Whew.

Karen and Mom came back then, bearing a black tea latte for me (thanks Mom), I got dressed (after, of course, the nurse made me stay 30 minutes, taking my blood pressure twice), and I was wheeled to the patient pick up area, where Karen picked me up.  We drove home, me feeling relaxed and relieved it was over, and Karen feeling relieved I was relieved.  We stopped at Pastini to pick up a to go order of macaroni and cheese with chicken for me as a little reward/celebratory meal.  I ate half of it immediately when we got home.  SO damn tasty.

All in all I am so glad it’s over.  The anxiety of having the procedure is lifted.  I feel my shoulders sort of slowly moving down to where they should be, instead of up by my ears as they have been.  I feel the relaxation sort of taking hold of the rest of me too.  It’s nice not to have that tension.  Not to have to do the deep breathing exercises every other minute.  It’s good.  I’m sore, but it’s good.  I’m going to be sore for a few days, but again, it’s good.

We have an appointment with my oncologist on the 23rd to find out the results.  10 days.  Lets all say it together… remission!

Monday

July 12, 2010 tokenhippygirl 3 comments

Had a blood draw this morning.  We went in fairly early, after cheerios and ATRA, to fit with Karen’s work schedule.  A quick trip in and a quick trip, with a stop at Starbucks for chai and a black tea latte of course, home.  We happened to see Steph jogging on our way and stopped to chat for a few minutes.  It was great seeing her.

My numbers from the blood draw were good.  Up again from Thursday’s draw. Tomorrow is the bone marrow biopsy which will tell the story.  Everyone get your good vibes, prayers, thoughts, and any other great emotion you can muster for the communal chant of… remission.  The test is at 2:00.  We have to be there at 1:00 so I can check in and get pre-meds.

As for the rest of today… home, watching movies again, talking to my good friend Penny on the phone, giving Mom a call with today’s numbers, having lunch, eating a fruit smoothie, petting Weston and Riley, and listening to my honey tell me through the window that the snake was back.  Karen is outside now, talking to Kev, and taking a break from staining the deck which she’s been doing for about an hour.

Stir fry for dinner tonight….  sounds good to me.

Home Sweet Home

Today we are hanging out at home.  It’s nice… watching movies (currently Men in Black), staying cool, etc.  Karen went to get plants for some of our flower pots earlier today (after watering the flower beds and finding the rubber boa) and Kev went to get stain applicators (they are going to stain the front deck later today).  Now Karen is talking to Mary and Martin via Skype (I went in to say hello for a few minutes… it’s hot in the office so I didn’t stay too long, though it was great to see them… and great to see the pregnant belly where Jackson is hanging out).  Not much going on here today… just really nice enjoying being home.  Appreciating it.  Loving it.

Categories: Family, My LiFe Tags: , ,

Venturing Into the World

July 10, 2010 tokenhippygirl 1 comment

Today we went out for the first time… other than clinic visits and such that is.  We went to see the movie Eclipse at the local cinema.  It was great.  Yes, not only did I like going out, I liked the movie too.  I know there are doubters and naysayers out there about the whole Twilight thing, but I am not ashamed to admit that I liked the books and like the films as well.  They seem to get better with each one.  Number three was definitely better than two, which was better than one.

It was nice to get out… and really nice that Stacia joined in.  So good to see you girl. Really good.

Now we’re back home.  I’m in my usual spot, hanging on the couch and right now, watching the Sci-Fi Channel.  Karen is mowing the lawn and Kev is pressure washing the deck.  It’s beautiful outside.  Not as hot as it’s been.

A good day….

Categories: Family, Film, Friends, My LiFe, leukemia

Friday

It’s Friday.  What else?  It’s the 9th of July… so big happy birthdays have to go out to two of my favorite guys…  Arnold and Eric.  Happy birthday gents…  you are spectacular men and I love you both.  What else does it being the 9th mean?  It’s the 9th… Karen and my 7 year and 3 month anniversary.  LOL  We used to celebrate every month… in the beginning.  Now we just smile and say happy anniversary.  So, happy anniversary honey… it’s been a magical 7 years and 3 months and I know every month and year that’s ahead of us will be just as magical.  I love you.

Otherwise… I’m hanging out in our coolish family room, Weston is curled up asleep next to me, Karen is working away in the office and the little girlie is curled up asleep in there with her, and I’m watching a continuously changing strange array of television shows.  There are no appointments today, meaning we don’t have to go anywhere if we don’t want to today.  Kind of nice.  I’ve had breakfast, my morning oral chemo with it, and my morning tea.

A nice mellow day so far…. life is good.

Hot Hot Hot

July 8, 2010 tokenhippygirl 3 comments

Wowie zowie (had to say it), it’s hot out there.  Luckily it stays fairly cool in our family room.  A fan, closed blinds, and loads of cement keep it that way.  Since it’s my main hang out, I’m feelin’ lucky.  I’m also enjoying the air conditioner we got for the bedroom.  We used it for the first time last night.  Nice…..

Otherwise…. went in for blood tests again today.  My now usual Monday/Thursday gig.  A student drew my blood.  She asked if she could, I said yes.  She did fairly well, with a slight bit of help from her supervisor.  My only comment… air conditioning is my friend.  The staff at the oncology lab enjoyed the comment, and agreed.  I actually walked into the lab and then back out to the parking structure afterward.  No wheelchair… woo hoo.  It was hot, but the walk felt good.

We already got the results back from the draw today.  Nancy, my chemotherapy case manager, called with them just a bit ago.  The news… numbers all moving in the right direction.  It’s a good thing.  The doctor’s only comment… prepare for the next round.  Meaning I have to get some walking in (around the inside of the house right now), get my strength up as much as I can.  I’m also supposed to be eating whatever… since I will most likely lose a lot more weight with the next round.  I did with this last one.  I was told to eat whatever taste good to me, since my taste buds are a bit off.  I’ve been taking it slow.  Finding things that taste pretty good and that don’t make me nauseas.  I’ve actually been eating pretty darn healthy, even though they told me I didn’t necessarily have to.  LOL  When do you have license to eat anything you want?  I’m doing veggies (now that I can since I’m no longer neutropenic) and simple foods mostly.  They go down well.  Oh, and I’m eating loads of yogurt.  It’s good for the GI.

And what am I eating right now, for dinner anyway?  I’m eating some fine mild chicken enchiladas that my friend Connie made for me.  Connie… I had the first last night… it was wonderful!  Thank you SO very much!

Why am I rambling about food right now?  Because I’m hungry.  LOL  Time for a snack I think.  Hmmmmmm… what to have?  Crackers and peanut butter?  Maybe…..  :-)

First Outpatient Doctor’s Visit Today

Today I, we, meet with my oncologist for the first time on an outpatient basis.  We have a list of questions.  Will be interesting to see what he has to say.  What we know is that my blood work, from the draw on Monday, looked pretty good.  I have to get blood drawn every Monday and Thursday going forward.  I also have my next bone marrow biopsy scheduled for Tuesday, July 13 at 1:00 at Sunnyside.  Yes, I asked for pre-meds.  LOL

In other news… it’s going to be a scortcher today.  I actually went out and stood on the deck for a bit last night, after it cooled down.  Nice.

Here Comes The Heat

July 6, 2010 tokenhippygirl 3 comments

I’m sitting here in our family room typing on my new laptop (thanks honey!).  My sweetie is sitting out in back at our little table, under the umbrella, working.  Nice place to work.  Mom just took the dogs for a walk.  It’s supposed to be hot-ish today.  Near 90.  I’m having a decent day.

My days go like this, pretty much…. sleep to 8:30 or 9:00 (so nice to be able to sleep after not really being able to sleep in the hospital for so long), get up and come into the family room.  Get set up with pillows and a blanket (Debbie… I’m using the purple blanket you made for me… I love it.  Thank you so much!), tv on, pre-meds (anti-nausea) taken.  Breakfast (consisting of either cheerios or cream of wheat or rice) about a half an hour or forty five minutes later accompanied by the 5 pills of ATRA (oral chemo).  Then it’s just a day of sitting watching tv, playing on the computer, etc.  I get some snacks, I get lunch, then at dinner time I get, yep… more pre-meds followed about a half an hour or forty five minutes later by dinner (lately that’s been steamed smashed potatoes with broccoli and cottage cheese on it) and 5 pills of ATRA.  I’m taking 10 a day.  Then, after watching a movie with the family, bed time at 10:00 ish.  I’m feeling OK.  Stronger than I did, definitely, before this whole thing started, but not nearly what normal would be.  Weird to have this very low level of energy.  But again, it’s better than it was when this whole thing started.

So it’s supposed to get up into the 90′s this week.  Good thing my honey went and got us an air conditioner.  We are set up in the bedroom with it.  Thank goodness.  If it gets too hot in the family room during the day (and this is usually the coolest room in the house normally) we can move this show to the bedroom during the real heat of the day.  It’s the small things in life that make it, ya know?  I’m grateful for that air conditioner.  I’m grateful for my honey, for my Mom walking the dogs, for this blanket, for the friends and family who keep sending me notes and holding me in their hearts.  I’m holding all of you back you know…  hanging on tight and feeling the warmth of all that love.  Brings a warmth to my soul much warmer than the heat that will come in the next few days.  MUCH warmer.

Home Again Home Again

July 4, 2010 tokenhippygirl 3 comments

June 1 I went into Sunnyside Hospital and July 1 I was finally able to leave.  It was a very rough last couple of weeks there.  I think the chemo finally caught up with me and my system.  My GI tract totally got wiped out.  Meaning…  loads of bad things happening.  I felt terrible and pretty much was handling things hour by hour.  It wasn’t good, but I kept looking at it like along with the feeling so terribly bad the chemo was also taking care of the bad stuff.  That’s the idea.  It’s just tough getting through some of it.  I did though… thanks to Karen and Mom and the nurses at Sunnyside.

Now… home.  And happy to be here.  I feel more rested and stronger.  Finally yesterday and today eating a little more like normal.  For a while at the hospital I wasn’t eating.  I was on a liquid diet hooked directly into my arm because I couldn’t eat.  That ol’ GI Tract thing… couldn’t handle food.

Next steps…. I go for blood tests tomorrow, then have my first outpatient appointment with my oncologist, Dr. Bigler, on Wednesday.  He will go over the blood work and talk about where we are at with everything.  I’m supposed to have my next bone marrow biopsy in the next week.  That will tell us where we are at.  If I am in remission then we move on to the first of three consolidation rounds (three more rounds IV push chemo) all the while taking the oral chemo meds (which I am taking every day).

In other news… my baldness is almost complete.  I’ve been joking about how I’ve been losing it just like male patterned baldness would occur.  Top front first.  Mom gave me another close shave with the clippers.  I still have stubble up there, but it’s going.  And I have to say… I don’t really mind.  Easy to take care of and really not that bad looking.  Who knew I’d make such a good looking bald woman.  LOL

So that’s pretty much it for now.  Karen and Mom continue to take such awesome care of me and thanks to some of our friends who, as a birthday present for Karen, came up and did loads of weeding in our flower beds.  That was the best gift you guys could’ve given her.  We love you very much.  And Don and Mom, thanks for the yard work as well.  You guys have been so great through all of this.  I am just so grateful for all the fantastic people we have in our lives.  Blessed and lucky.  That’s what we are.  Blessed and lucky.

Wow…. Green Around the Gills

June 17, 2010 tokenhippygirl 3 comments

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

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

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

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

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

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

This laptop rocks….

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

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

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

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

From Itch to Eternity

June 11, 2010 tokenhippygirl 4 comments

Oh my! This whole process has been fraught with adventure. As one might expect. Today… no exception.

I woke up thinking… yay, no push. My 8 day cycle is over for now, and it’s all just a two or three week waiting period to see how the counts go and then move to the next step. I also woke up today feeling better than yesterday, which is great. It’s all a matter of degrees for me right now. I feel better than I did yesterday, or not. Today I woke up feeling better than yesterday. It’s good.

I had a chat with the doc… had my protocol adjusted a bit based on that and her consult with another Onocology doc from OHSU. New-ist thinking is that it’s good to give platelets to anyone whose numbers are under 30,000. Mine have been between 700 and 17,000. So the decision was made to give me platelets today.

Which brings me back to the adventure for today. The plan had been for mom to cut my hair today (going to about 2 inches all over to have it more manageable in here and also to be closer to the bald level I may have in a week or so… ), Karen, Mom and I were going to have a little walk, I was going to take a shower… all of that. A simple but nice and mellow day.

Then the platelets started going in. I’ve had three transfusions before this, and as they go platelets are the most benign.

… I just wrote a whole huge post here, which I lost because I got booted off the hospital internet. Blurgh!!

To not have to re-write it all I will just say this… I was just minding my own business getting some platelets when the itch began. It can be a possible side effect of getting blood products. I’d not had an adverse reaction until this point. I looked at Karen and Mom and was like… I’m itchy. They were like… press your button now.

Whirlwind… nurses in, platelets stopped, benadryl directly injected into my picc line… then steroids directly injected into my picc line, then nurses bagging up the left over platelets (never thought I’d have my platelets bagged… LOL) and taking blood from me so they could re-type and cross me with the platelets and also they were going to check the platelets. One of the nurses made a joke about how someone shouldn’t probably mow the lawn before they donate… I laughed. It was a good joke. Oh, and by the way… a direct push of benadryl can cause major lightheadedness for a time. Let me tell you.

So my little uneventful day turned and I had a mini adventure. It’s 9:00 now and I am ready for the itching to completely stop. It hasn’t yet. I still itch around the picc line and occasionally on other spots on my body. Hopefully by the morning it will be gone. My guess is I will be getting more platelets tomorrow. Let’s just hope for a shut in who doesn’t mow.

New Laptop!

June 10, 2010 tokenhippygirl 1 comment

A quickie post to say I am now typing on my new laptop. So much easier to blog, Facebook, email, and surf. Thank you my honey. You are always so sweet to me. This thing rocks!!!

Categories: LiFe