Thursday, July 30, 2015

Day 79

Today was my rest day.  Yesterday at 4pm and 4am I had my chemo and it went well.  Some of my numbers are starting to drop and others are going up because of the steroids they give me.

Great thanks to all my friends at Velocity, since I am not neutropenic at the hospital I can use the donated funds to order out restaurant food to the hospital instead of eating the hospital food.  What a difference this makes in the amount I can eat and in my overall happiness!  Because soon after I go home I will be neutropenic again so this is my chance to get some comfort food and salads!  :)

Wednesday, July 29, 2015

Day 78

Today I will go to the hospital for my second round of chemo!  My doctor conferred with other doctors and they decided to go ahead with the second round today and slightly reduce the dosage of the chemotherapy drug.  This might help my bone marrow recover more quickly this round.
I will be in for 5 days, then come home and recover and rest.




Monday, July 27, 2015

Day 76

I got my labs run today, assuming they would be good enough to start my next round of chemo but they weren't.   My WBC, neutrophils, and platelets all went down so I am neutropenic again.  I was also hoping the doctor would just go ahead with the next round but he decided to wait and try again on Wednesday to see if my platelets can be over 100.  They were 86 on Friday and 78 today.   I still feel fine because my red blood cells stared at 12.  I asked them if it was OK if they went down and they said yes, most peoples will fluctuate it is just that they are watching mine so closely and because they are low any change is noticeable.

I am disappointed but I know they know best and God is the author of time so I just need to enjoy this Texas heat and wait for His perfect timing.  I was not neutropenic over the weekend so that was a lot of fun going to the park with the kids, out to eat, and not scaring little kids at the grocery store.  :)


Thursday, July 23, 2015

Day 72

I got more blood work today and my number are still too low to start chemo this week.  My platelets are 63 and my doctor wants them to be over 100 before starting another round.  On Monday they were 62 so I am making some but just not enough to make the number move exponentially.  Platelets only live for 3-5 days so I am making enough to back fill the ones that are dying.  I get more tired during this time, as my body is working hard to make brand new blood.
I am still neutropenic as well, which is getting old.  The great thing is I am able to do all of this from the house and able to be with my family.

I will get retested on Monday and hopefully be ready to go into the hospital then.

Movie night tonight, Sandlot!  

Monday, July 20, 2015

Day 68

I got my blood tested again today and my numbers are up but not enough to start my next round of chemo.  I will go again on Thursday and see where they are at.  They should be high enough to start my next chemo on Thursday or Friday.

Just a recap for everyone, hopefully it will be easy to follow:

  1. I have completed my induction chemotherapy, it lasted 3 weeks 5 days in the hospital.
  2. This round induced my remission (YEAH) and allowed me to move on to the consolidation chemo.
  3. I will have 4 rounds of consolidation. 
  4. I have completed 1 round of consolidation and hope to start my second this week. 
  5. I must wait 3-4 weeks in between each chemo to allow my bone marrow to start grafting again.  They cannot start another round if there is nothing to kill.  
  6. If everything stays like it has so far I will have a round end of July, end of August, and End of September.  
  7. Each round of consolidation is 5 days in the hospital and then recovery at home. I am neutropenic (no immune system) for almost the entire time at home.  
Thank you for everyone's support, prayers, love and help!  

Thursday, July 16, 2015

Day 64

Hi All!  

My labs from yesterday showed that my bone marrow is starting to work again, WBC and platelets were up!  I haven't felt good lately and had a low grade fever but this can be from my body working so hard to graft my marrow.  I still needed to get some red blood cells today and already feel better.  I feel much less dizzy and out of breath.    

As of right now I will start my next round of chemo next Tuesday.  I am not really looking forward to doing another round but happy it has gone fast..  

One of the bags of red blood cells I got today.  Thanks donors!   
What are irradiated blood cells?  
People with leukemia are candidates to have bone marrow transplants so they have to receive irradiated cells.  This is because every time you get blood there are little signatures of the donor's immune system (T-lymphocytes), so if you get a bone marrow transplant you can't possibly match 40 peoples immune system.  Also, because most leukemics don't have immune systems, so if there is a reaction to the blood then the body could not mount a counterattack which causes Transfusion- Associated Graft-versus-Host Disease (TA-GvHD).  This is really bad and is about 90% fatal so it is really important that I get irradiated cells!  They put this cool label on the bag that removes the "NOT" after it is exposed to x-rays.   They also reduce the number of Leukocytes which helps reduce the chance of a negative reaction. (I think I just made a triple negative, which would still be negative? )    Still curious, read m ore here: http://www.bbguy.org/faq/irradiation.asp

Cool label
 

Thursday, July 9, 2015

Day 57

Good news!  I went to the ophthalmologist today and there is not permanent damage to my eyes and after all the chemo is done they should return to how they were before all of this started.  This is really good news to me, they can't replace your eyes!!

I will go to the hospital tomorrow to get more platelets as they are low again at 10.  I am bruising like an old lady on my hands, arms and legs.  It is kinda funny!  If I bump myself or the kids hit my arm I will have a bruise later that day :)

I have been able to go to the pool a bit with the kids.  I don't go in but it is fun to have a different environment.  I took this picture before my last round of chemo.

Tuesday, July 7, 2015

Day 55

I hope everyone had a great 4th of July weekend!  I had a good time, McKenna's parents came into town and we had great food and fireworks.  I have been neutropenic again since July 3rd so having to wear the mask out of the house and watch what I eat.

Yesterday I went to get my labs done, I go twice a week.  My platelets and red blood cells were low (this is expected) so I went to the hospital in Round Rock yesterday and got platelets and today I go to get red blood cells.  So, I am at the bottom of my levels again which is good.  Now, we need to see how long I stay low and how quick they will recover.  Once they recover, I can start my second round of consolidation.

I feel ok, more tired and out of breath due to my low levels but much happier doing this at home than in the hospital.  My cloudy vision has gone away but now it is blurry so I will an ophthalmologist just to ensure there is nothing wrong with my eyes.  It should go away with time.  

Sorry for so many days with no post but there wasn't much going on each day.  Pray we get this round completed quickly and with no fevers or complications so we can move forward.

Wednesday, July 1, 2015

Day 49

More good news, we just heard that the final results from my last biopsy:
They could not find ANY leukemia cells and they could not find any cells with 8,21 genetics!  Thank you Jesus.

This doesn't change the consolidation chemo but as my oncologist said, it does give us a chance to get out the pompoms for a moment.

My vision is about the same, still cloudy and hazy.  I am feeling ok, just a bit more tired each day and flu like.   Excited for the 4th of July coming up!