Day 48

I am home!  I came home yesterday from the hospital, finishing my first round of consolidation. I did great at the hospital, no complications!   One of the side effects with this high dose is possible blindness so I have been taking milky steroid eye drops 4 times a day to keep my eyes strong.

This morning when I woke up everything was very cloudy.  I spoke to the doctor and they said that this chemo comes out through the eye duct so it can cause vision problems.  It is nothing to worry about but it sure is annoying having everything cloudy and hazy.

My levels have started to drop and I will probably be neutropenic sometime next week.  I will just go up to the hospital in Round Rock to get my blood products which will be nice and convenient.

Happy Home with my family! 

Day 44

There are so many people that have helped with food, kids, rides, mowing, emotional support, and just kind words.  Our family is so grateful for all the unmerited blessing and support.

I wanted to share a unique blessing that my friend and co-worker Lawrence Cheah, in Penang Malaysia, has been doing.  His family often feeds the poor and homeless in Penang and since I have been diagnosed they have done this in my name.

Meat Buns

Durian Cupcakes

People enjoying the gifts from Lawrence's family

Hot Potatoes

Chicken Meal

Day 44

Today I will get my second round of Chemo at 4pm and 4am.  My friend and co-worker Nate asked several questions that I will answer here in case others are wondering the same thing:

1. "Why does your hair fail out?" 
1. Chemo drugs work by killing cells that are dividing quickly, which is why they work against cancer cells. But other cells in the body, such as those in the bone marrow, the lining of the mouth and intestines, and the hair follicles, also divide quickly. So, because your hair grows fast, it is affected by the chemo.  That is also why they cannot use the loss of hair to help others who want to grow it back.  
2. "I have been on the bone marrow registry for 2 years and I have never received a call.  What do they have against Italians with big bones? "
1. Siblings are the best match for bone marrow transplants.  There needs to be a very high genetic match in order to be a donor so that the recipient body doesn't reject the new bone morrow and new immune system.  Some people don't have good matches with siblings or have any siblings, so they must get an outside match, like the bone marrow registry.  White males have the highest chance of a match on the registry but the simple truth is it is hard to be a close genetic match to a perfect stranger that is unrelated to you. 

If you have any others, feel free to ask.  

Day 43

Day off

Today was my day off for Chemo, a day for my body to recover a bit before I take the next dose tomorrow.

I am feeling good still, starting to feel a bit of the chemo but overall doing good.  I gained 3 lbs yesterday from the water weight, I tried to walk as much as possible today so hopefully it will be off tomorrow and out of my legs!

Day 42

I started day 1 of my first round of consolidation today!  I am back with all my great nurses and doctors and getting great care.  Coming to the hospital this time was so much easier than the first round.  I am feeling good and my levels are all good today, soon they will be falling again due to the chemo.

Question - What questions would people like answered?  Feel free to email, text, or comment on the blog and I can compile some questions and answer them as best I can.

Here is a picture of Wall-e working hard for me again.

The chemo I got last time was given over 24 hours.  This time it is 3 times stronger and given over 3 hours two times, 12 hours apart.  It is called Cytarabine and the dosage is called high dose ara-c.  I will get my next dose at 4am...liberals have struck again.

Day 41

I am in Remission!

  

I give praise and thanks to Jesus for this healing and how His grace has held me through this first part of my victory!   1 Chronicles 16:8-9

The head of Texas Oncology and the oncologist that has been overseeing my treatment in south Austin, called me to tell me that they have an unanimous decision that I am in full remission!  He conferred with two pathologists, multiple oncologists, hematologists, and all agreed with the result and that I should move forward to consolidation chemotherapy.

Consolidation is only 5 days in the hospital (strange to say, only 5 days) and should be much easier than the first induction phase.  I will come home and get blood transfusions in Round Rock as needed in the week or so after the treatment.  After I recover for a while to allow my bone marrow and blood to recover again, and repeat for a total of 4 treatments.  After that, they will do another biopsy and if that comes back clear, then I will be declared cured.

So I go to South Austin Hospital tomorrow to start my treatment and day 1 of this round of consolidation.  They wanted to do this first round in south Austin so they can watch me and ensure I handle this type of chemo well.  If I do well, I can do the following ones in Round Rock.  So tonight we celebrated with real restaurant food!

Day 40

I got the preliminary results from the biopsy and it did NOT show any leukemia cells in the bone marrow.  But, they don't have the full results back yet so we cannot be 100% sure that it is all clear.
Unfortunately, we don't have a date of exactly when that will be done but it should be by the end of this week.  So, not really much to report in terms of the biopsy results because the more detailed results could come back and say there is leukemia even know the first results did not.

Good news!  I am no longer neutropenic!!  I have just enough neutrophils!  No more mask unless people are sick in a dirty area.  I can eat out on a limited basis but already had a wonderful huge Mighty Fine burger!  In honor of no longer being neutropenic I am posting a picture of a neutrophil:

I engulf and destroy invading microorganisms.

Day 36

Today I had my third bone marrow biopsy but this time I was not in the hospital already so it was done as an outpatient procedure.  The doctor that did this one does prefers the needle and mallet method, as you can see from the pictures below.  In the end, I didn't care because I was passed out from my three "margaritas" they gave me.  I asked for my usual 2 and before the doctor started I raised my head up and told them loudly and clearly that I was still awake.  They remedied that for me quickly and I woke up with my wonderful wife by my side.  I have learned to be very vocal and ask for what I want during a medical procedure.  Extra blankets, warm blankets, more pillows, move this wire, extra drugs, location of shots or IVs, timing of medications, types of medications, even the tools they use.  You can really control a lot of your care, you just have to ask!  

This is a very important one.  These results need to be completely clear, not leukemia or any other abnormal cells at all.  If this is the case, then I will be in remission and I can start on the 4 sets of consolidation. That would be only 5 days in the hospital then go home for 1-2 weeks and repeat.  If not, they I might have to start over with the another induction which equals 3+ weeks in the hospital.  So, in the name of Jesus we are praying it is 100% clear to the doctors that my bone marrow is leukemia free!

Hand cranked needle to enter bone

Mallet or something similar to tap past the hard bone into the juicy marrow

I have a follow up appointment Monday with the doctor to get the results!

Day 33

Hi Everyone!  I went to see the Oncologist today and got some labs done.  My platelets are 496, White Blood is 2.0, HGB is 12.2.  So everything is still going up!  I have to wait until later today to get my neutrophils count to see if I am still neutropenic.  I have another appointment Wednesday to check labs, a biopsy Thursday at the hospital, and then follow up for the results next Monday.

My neck is much better!  I am using it more each day so I think that is helping.

I had a great weekend with the family and kids.  We bought a big bouncy water house for our stay-cation so we can play in the backyard.  A little strange playing in the water with a mask on, but you gotta do what you gotta do to have fun.

Don't laugh at my skinny butt

Day 30

Today I feel stronger and my neck is doing a little better as I use it more and more.
Not much to update right now.  Trying to eat and gain as much weight as possible while I can.

Funny thing:  The antibiotic they sent me home with is good for killing anthrax and the plague.  I guess I can add that to the list of things I don't have!  :)

Day 29

I am gaining more strength each day and learning how to live at home.  My biggest and most annoying problem right now is the vain that goes from my neck to my chest where they have the catheter to above my heart.  It is very painful when I move my neck wrong or if I am using my neck a lot.   The doctor said that it will just be like that and because I am skinny there is no room for it to move around!

I went to the clinic in Round Rock this morning and got my labs done.  Red blood up to 11.1, Platelets up to 311, and White blood cells up to 1.8!  I still don't have any neutrophils so no immune system yet.  I have another appointment on Monday and Wednesday next week as well as another biopsy next Thursday.  Based upon the results from that biopsy will dictate the next steps and the next type of chemo.

I love being at home with the family, taking a shower at in my shower and of course sleeping in my bed.

The liberals have dug deep into my brain as I still wake up at midnight and 4am!  I will work on getting them out!

Day 27

I am finally home.  It was a whirlwind of a morning as I got more red blood and then they disconnected my port and cleaned that up.  For some reason my red blood cells went down yesterday so they gave me a boost before I left.  My platelets nearly doubled to 96 as did my white blood cells to 0.8.   My neck and chest were very painful during the ride home so I took it easy for a while at the house and took an amazing nap in my recliner!  

I was able to take a walk with McKenna and Natalie to the mailbox and feel the warm sun!  It will take some adjustments but the feeling have having both kids sitting next to you on the couch is pretty much the best medicine you can buy.

The same rules from the hospital apply at the house until I get an immune system..  No kids visitors, no flowers, no outside food, no visitors with allergies or sick or been around other sick people.  I wear a mask if I leave the house and we are being very careful until we are passed this stage.

This is my new live in nurse, Natalie.  She checks on me and makes sure I am drinking my water.

Natalie taking care of Daddy.  

Day 26 Update

I am going home tomorrow!!!!  I don't know all the details yet but I will be home tomorrow! 

Day 26 Quick Post

This morning my bone marrow started to work!  My red blood cells went from 8.5 to 10.5 and my platelets went from 26 to 46.  This is the first time my blood has increased by itself since being admitted to the hospital 4 weeks ago!!  My white blood went up a little bit from 0.4 to 0.5 so everyone says now it will jump exponentially.  Exciting to see stuff start to move.

I will post another update later today once I meet with the doctors.

Day 24

Another pretty uneventful day in terms of movement.  My red blood cells seem to have stabilized right about 8 which is good.  My white blood count went down, to 0.2.  A different Oncologist came to see me today, since it is Saturday, and he said it is a good thing that it is taking a long time for the white blood cells to grow back.  That means we killed all the leukemia.

My three older brothers came up today and brought me dinner.  We had Opa's sausage, Velveeta mac-n-cheese, and green beans.  I ate my whole plate!  We watched the history of the first triple crown winner in 37 years, shaved my brother Tim's head, and then played cards against humanity.  It was really a blessing and a great distraction.  I have not laughed so hard in weeks!

Tony, David, Josh, Tim
All shaved down!  

I had a slight fever today, low 99s so I am still doing great.  Praying for God's timing for my white blood cells and to be able to go home on Monday.  I told God that I feel as if I did my job on this first round, got it all cleared out, stayed healthy so now it is time to go home.    Psalm 66:20

Day 23

No big updates today.  We got some update from the pathologist that is looking at the extra tests of my marrow and he told my oncologist that they didn't look like the ones I came in with, not the Leukemia 8,21.  Before any of the tests were done when I first arrived, he already thought my blasts looked like 8,21 and he was right.  Pretty impressive.  So if he doesn't think they look like the bad stuff I came in with then hopefully on Monday we will know for sure they are not.  At that point, I would be in remission

No movement on the WBC today, still 0.3.  I got some platelets today but didn't need red blood cells as I have stayed level for two days.  So maybe I am making some red cells already?  I got a new port needle today, with only one attempt!  It is the little things in life that make you happy!  Like only being stuck once with a 1 inch needle instead of 2 or 3 times.

My older (but smaller) brother David shaved my head today.  First we did a Mohawk

Mohawk

Then, we took it all down.  

All cleaned up

Tomorrow I have all 3 of my brothers coming up to see me, which will be a blast!!  I need to rest up for it tonight!

Day 22

I got some results from the biopsy today.  When I came in 3 weeks ago, 90% of my bone marrow was Leukemia cells, today they didn't see any in my bone marrow.  This is good news!  But, they did see something in another test that they have to do some molecular tests on so they are holding off until those results come back before saying if I am in remission or not.  One way I heard it said to me today, was it was the second best news you could have received today.

Still no white blood cells as I don't have any bone marrow based upon the biopsy.  This is good, they did a good job killing it all.  So, now are just waiting for it all to start working again.  I will be staying the rest of this week and weekend for sure.  Today is 3 weeks since I was admitted to the hospital.  It feels longer than that and shorter than that all at the same time.  

Many people have asked if there are vitamins that I can take to help make white blood cells and the doctor said my body has all the fertilizer it needs for the garden, the issue is that he put so much weed killer down it takes a while to wear off before something can grow.

Tomorrow is our 11 year wedding anniversary.  I am so proud of my wife and amazed to see how strong she is each day.  She has taken her vows seriously, in sickness and in health.  :)

Day 21

No fever last night or today!!  I got some more red blood cells today, which I love so I can actually have a conversation without sounding like a grandpa.  No movement on my white blood cells so maybe tomorrow.  It should be any day now.  

I had my biopsy today and since I have already done it I knew exactly what to ask for:  I want two margaritas and the drill.  They sometimes only give you one dose of drugs to make you loopy and last time I had to ask for more.  So today when I went in I told them right away to just start with two.  I must have flirting or talking still so they gave me another - Great!  I don't remember a thing!  I didn't even hear the drill running like last time.  And the drill is important because, then can also use some sort of a hand crank which is just ridiculous.  Results should be tomorrow or Friday.  

Picture of the drill here: 

My hair is starting to come out, so tomorrow I am just gonna buzz it off.  Frank suggested I pull an Idan for a day and do a Mohawk or a lightning bolt but I don't think I can pull it off like Idan. 

I feel better than yesterday which was better than the day before!  Praying for good results on the bone marrow (no Leukemia) , no fevers, and white blood cells to start coming forth!   

Day 20

My fever broke around 4am this morning and I didn't have another one until about 2pm.  I have had a low grade fever, mid 99's so not too bad and as of now (7pm) it has gone away again.

I feel much better today and can walk around easier.  Having a clear head is so important for my daily life, it lets me think better and have conversations more easily.  More good news, I got an egg crate on my bed...thanks to my wonderful wife and that helped by back last night.

Update on going home:  We will watch it and reevaluate at the end of the week.  But, as soon as my white blood count goes up then I should be able to go home pretty soon.  The low grade fevers might be a result from my bone marrow working hard to make cells.  Since I am still in the hospital I will get another bone marrow biopsy tomorrow morning sometime.  It is not too bad, but I am not looking forward to it or to not eating or drinking after midnight.

I got some platelets today and might need some more tomorrow before the biopsy.  Big thanks to my friends at Velocity that attempted and completed the blood drive at Velocity.  I know there were many others that knew they could not donate but wanted to as well.  Very cool to see everyone step up and help the community.  I may have said it before, but without blood products I would be dead.

Bus and people who gave or tried to give.  

Continue to pray for white blood counts to increase and no fevers.  The doctors are still very happy with my progress and think I am breezing through it.

Day 17-19

Well, I am not going home today.  I started to feel bad on Saturday night and then developed a fever on Sunday and Sunday night.  I knew I was going to get a fever, I know how it feels now.  First my mind goes, I can't sleep well, can think right, feel light headed.  Then I get super cold and have the chills.  Then the fever comes and I get real hot and start sweating and feel like I can barely move.
Thank God, this happened before I went home and that it was much less severe than the first one.
Once I get to 101 they are required to do a bunch of emergency tests like chest x-ray, blood and urine cultures (to see if my blood or urine is infected), and stronger antibiotics .  Just like last time, everything looks good so far.

Today I feel better than Sunday, I have a little more energy and not as light headed.  No fever today!  My biggest problem now is my back, it has had enough of the hospital bed after 2.5 weeks.  I am trying all sorts of things to make it better.  My port is bleeding a little bit today, that is just par for the course with this thing.

Good news- My red blood cells went up by themselves, which means my bone marrow is starting to work again.  My white blood cells are still at 0 but they expect them to jump up any day now.  The doctor wants to talk at the middle of the week to see where I stand and go from there.  God's timing is always perfect so I am patiently waiting for the day I can go home.  My brother arrives tomorrow from Boston, it will be great to have him here.


Cool thing, a 92 year old women completed a marathon to raise money for Leukemia.  Pretty amazing!  Click here for the story.