Saturday, March 30, 2013

One Bad Night

On Friday my blood count was 8.0 and platelet level was 4.  I was covered with petechiae, tiny pin point bruises, so I knew it was low, I just had no idea how low.  Since the Infusion Center is not staffed after 6, and to transfuse you must have 2 RNs present, I had to go to the hospital, and upstairs to a room to get the platelets.  I did not get home until after 11 p.m.  I was stressed and had a monster headache.  I will not write the horrible experience I had, only that I do not want to ever go to that floor again.  Not that anyone will ever listen and let me go elsewhere if it happens on the late or over the weekend again.

There was a bright spot in the evening though.  I met an old friend from high school.  I had not seen her since then.  That part was great.  We graduated the same year.  (1972)

On Monday it is back to normal.  Monday is blood day.  We'll see if this one 'took' and if the pounding in my ears is left over stress or that my blood level is now very low.  I've forgotten what life was like before.

One great thing. I ordered a laptop.  How do you sit and wait patiently for it to come in?  I am not a patient person.  I am very excited about it!

Monday, March 25, 2013

Cycle 3/Day 6

Today was day 6 of chemo.  It was also "blood day", better known as CBC day.  I knew that I still felt like my count was low, but I was surprised since I got 2 units of blood and 1 unit of platelets on Friday.  The test today said my blood count was 7.1 and my platelet count was 6.  Less than a week ago my platelet count was 12, then with the infused platelets it should have been good.  So, I got the talk, no sharp playthings, no shaving and no bruising.  Right.  Life is full of all of them.  I have to admit that I am shaken.  This time it lasted only 2 days.  No change in my numbers and more need for blood doesn't seem like things are looking up.  Now I am very worried about the next bone marrow biopsy.

Another 6 hour day in the infusion center.  I'm very tired.

Saturday, March 23, 2013

Another Long Day

Yesterday, Friday, I started out with my chemo (Vidaza).  Then off to the infusion center for 2 units of blood and one of platelets.  I have to admit I was quite happy to get there as I was slightly dizzy and so tired.  It was a long day though.  I got there around 10:00 a.m. and left about 4:00 or 4:30.  I have many antibodies so the blood seldom matches exactly but, the first unit did.  Surprised the nurses too!  Unfortunately the second unit was the "least likely to cause a reaction" which meant Tylenol and intravenous Benedryl.  I wanted to go to bed the minute I got home.  I tried to stay up but fell asleep despite my intent.  It was a 10 hour night for me.  Very stiff sore morning...  I never feel great right after I get blood, but the dizziness was gone.  This afternoon I will notice a difference.   The nurses in the Infusion Center are wonderful.  I also give thanks for the people that donate blood.  

On a lighter note, my sister is on vacation.  She sent me photos of where she was  earlier this week.  Noccalula Falls in Alabama.  It was my favorite place when I was a child.  We could not go down to visit family without stopping there, mostly just to make me happy.  Loved the photos!  Lots of text messages from her too.


Monday, March 18, 2013

Cycle 3/Day One

Last Monday, the 11th, my count was 7.6, but my platelets had risen on
their own from 16 to 32!  Count was below comfortable so blood was
ordered and on Wednesday, the 13th, 2 more units over another 5 hour
stay in the infusion center.  It had been 15 days since the last transfusion and I
was so hopeful that my own marrow was finally kicking in making my very own

Today was my appointment to find out if my numbers are improving.  Started out with labs, then a talk with Dr. O.  The count was first, and not a good reading.  Hemoglobin was 7.5, and it has gone that low after getting 2 units just 5 days before.  Platelets are at 18, that is down 14 points.  Then the discussion of numbers with Dr. O.  My numbers have not improved.  I don't know what to feel.  Just kind of numb with a little bit of brain drain.  I'll think about it later.  At any rate, another count on Wednesday, then a trip to the infusion center, probably Friday, and 2 more units.  I am so tired that I am almost looking forward to it.   But it is always a very long 5 hours.....

So, it was my first chemo day of cycle 3.  Just 6 more days to go.
After this cycle I will be going back to Indy for another bone marrow
biopsy.  I even have my appointment set up.  I've had 2 biopsys already and they hurt.  I am not looking  forward to it.

Thursday, March 7, 2013

Cycle 2; Week 2

Last Thursday my count had my hemoglobin at 9.0 and my platelets at .9, so it was transfuse platelets again.  I'm still fighting the cold, though it is better, so I expected this to be another bad week for the numbers.  Monday my hemoglobin was 8.5, platelets were 16.  I don't have to transfuse platelets if they reach over 10, so I was happy.  After a week of such exhaustion I was sure the tests today would be low.  I had already gave a weekend day over to transfusing.
Today's numbers were great!  Hemoglobin was 8.1 and platelets are 26!  My white  cell count stays pretty much around 1 so I don't look at it anymore.  I have increased my platelets without being transfused and the blood drop was minimal! I hope this is good news and I'm on the way up!
Another good thing is being upright more now.  I have not napped as much, though laying down is not napping.... just a 'rest yourself for a minute' kind of thing.  I've made it to the nightly news for a few nights too!  Just no energy to spare.
The wild, colorful dreams continue.  I don't know what that is about or what is causing them.  Perhaps a side-effect?  A very strange one.