Day 214

Today I got my port removed, a very big psychological victory for me.  It was great having it during treatment but it was always in the way at home with the kids and never let me fully relax while doing activities.
It was a simple procedure that I elected to have under general anesthesia to be stress free for me!  I am doing good and just relaxing at home now. Just a few days of rest and I should be back to normal.
I am continuing to get stronger and build my muscles daily.  I am walking further and faster and able to do more normal activities.  I am so blessed to have this all behind me during the Christmas season.
I will get labs done every two weeks and then another bone marrow biopsy at the end of February just to make sure everything is good.  After that I should move to having the biopsy every 6 months.

Thank you again for all your support and prayers.  Merry Christmas everyone!!  

Day 202

I am cured!   Thank you Jesus!

The full results have come back from my biopsy and it was 100% clean of any leukemia cells.  There was no genetic signs of any leukemia!  My treatment is done and there is nothing left for me to do except get my port removed and continue to gain my strength back.

I will have a follow up appointment next week with my oncologist to go over my plan moving forward, like how often to get blood tests, biopsies, and such.

Thank you for everyone's prayers, support, help, encouragement, and love during this time.  My family and I are very grateful for everything.  Merry Christmas to all!

Day 190

Great news, I have my bone marrow biopsy scheduled for next Tuesday, the 24th. So hopefully I will have the results by mid December.  I am continuing to feel better each day and gain strength.  I trimmed the bushes in the front yard yesterday and I think I overdid myself, but at least I'm moving around and making progress.

The CT Scan of my lungs showed that the last two areas of inflammation cleared up but two more grew. Just like last time.  So, I have to go back on steroids indefinitely until it clears up.  The pulmonologist was not worried since they have cleared up before and they look the same as the ones they did the biopsy on.  It is just annoying to have to be on steroids again.  For some reason, my body is making this inflammation, it is not any type of infection.

Day 187

Good news, I haven't had a fever since coming home on Friday!  I am still gaining strength from being sick and in the hospital a week but getting better each day.  I got my labs done yesterday and they were awesome!  WBC was 2.9, Neutrophils 1.8, Platelets 102, and HGB 9.9.  Just last a week and a half ago I had 0.2 WBC and 0 Neutrophils so they have really come back which stopped my fever and allowed me to go home!  They are up enough to schedule my bone marrow biopsy, so I should receive a call today from the hospital to get that scheduled in the next week or so.

I did the math the other day, in 6 months I have stayed in the hospital 11 weeks not including all the outpatient biopsies and blood transfusions that take up the whole day.  It is such an amazing feeling to know that I won't have to do that again, that season of my life is over.

Just to recap for everyone:

Final Steps:
1. Get final bone marrow biopsy to confirm no leukemia cells are there  There wasn't any 4 months          ago and I have done 4 rounds of chemo since then so there should be zero!
2. Get the results from the biopsy, that should take about 2 weeks from the biopsy date.
3. After the all clear is given, get my port removed.  I am praying to get all this done by December to     be done and ready for the new year.
4. Monthly checkups and lab work with doctor.

Day 183

I'm going home!!   I have had just a low grade temp or no temp for the past two days and my white blood cells are going up so I can go home!  I'm felling better with a little more energy.  I still cannot have a high temp at home, 100.5 or greater, but with some what of an immune system I shouldn't.

I will get labs next week and a final CT of my lungs to confirm all the organizing pneumonia is gone. After that, schedule a bone marrow biopsy, and wait for the results.

Day 180

I'm still in the hospital fighting fever with or without medication.  But it seems to me that my temps have been lower in the last 24 hours and I had one normal temp today!  So I'm taking that as positive!
When I came in I had a goal to go home Wednesday , knowing how long these things can last.  Still praying for Wednesday which would mean I need to have no temperature tonight.  My WBC has gone up to 0.5 from 0.1 Last Wednesday so this should help my fever break too!!
I got more red blood today, and that should be my final one. :)  I fell a bit stronger after getting that so hoping for a better day tomorrow.  My parents are in town helping with the kids and they came up to the hospital to spend time with me today, it was really nice!
The good thing is that I don't have any other condition to complicate the fever.  So all I need to do is beat this fever!!

Day 178

I got my blood and platelets on Friday, hopefully, my last blood transfusion.  Before I started the transfusion I had a low-grade temp so they did the transfusion very slowly and all was well.

Later that evening I started to feel crappy and started to run a higher temp.  It got to 101 so I had to go to the ER right away.  McKenna and the kids drove me down to South Austin Hospital and
dropped me off.  They admitted me to the oncology floor where all the doctors and nurses know me.
I am feeling ok, kinda flu-like and I will get really cold with chills them also get very hot.  They have me on two very strong IV antibiotics and some nice mess to keep my headache at bay and reduce my fever.

I need to be fever-free for 24 hours with no meds,  please pray this happens very soon.  I don't want to be here with a fever for 12 days like last time.  Monday or Tuesday is fine by me!!

My nurses made me a crown because I am a princess,  they give me whatever I want and move people around so I can have different rooms, etc.  I don't care if they call me a princess,  as long as I get what I want!  :).  P.P stands for Princess Pucci!

Day 176

All is going well.  I had a platelet transfusion on Tuesday, no issues.   I went to see my doctor on Wednesday and my red blood is is quite low so I am getting both platelets and red blood tomorrow.  
Feeling pretty tired and weak because of the low red blood and just trying to keep all the little infections at bay.  My mouth is better, doesn't hurt near as bad but now I have a spot on my leg that is infected and a hang nail that is infected.   Just part of having nothing to protect.
So I should be good for the weekend and hopefully this will be my last blood transfusion!!!  :)

Day 174

Sorry for the delay in posting.  Last week I got two units of platelets and two units of red blood on Thursday and Friday , respectively.  That was great so I didn't have to go to the ER over the weekend with low levels.   This is normal to get the blood products now, I am at the lowest point after the chemo.  

I have 0 immune system so I'm being extra careful to avoid crowds and stay indoors.  Because I have no immune system, I got another mouth sore which is now infected.  The lymph nodes under my jaw are super sore and the pain goes all the way up to my eye and ear.  I am on different antibiotics to treat that and hopefully contain it so I don't get a fever.  The also gave me a mouth rinse with liodocaine to numb the area - it is amazing!!!  Hydrocodine wasn't even taking the pain away.  

I have an appointment with my oncologist on Wednesday and will probably get more platelets then as well.

I have been asked often "What is next?"
-----Once I recover from the chemo, meaning all my blood levels are close to normal or not critical,  then they will do a final bone marrow biopsy.  After that one comes back clear then I am officially done with treatment!! Then I can get my port removed and just continue to get stronger before returning to work.  All of this should be done before the end do the year.

Day 165

I got home yesterday and doing good.   I am really feeling the chemo now, which is normal.  I will get my labs done Tuesday and Thursday this week to make sure I don't need any blood products.  

So for now I'm just resting and staying healthy during this fall season.  

Day 164

4am UPDATE -------   LAST BAG OF CHEMO-----------

Dear cancer,

You lost its game over for you.  It was really unfair even, me with Jesus on my side.  You tried to take my life, but you lost, you tried to take my family from me but that only made us grow stronger, my true friends shown like diamonds when you tried to bring darkness, somedays you took my joy, but the Son always rose the next day with new mercies that you could not overcome!  

You cut me, took my hair, made me bleed, sweat, hurt, ache, swell, stay in hospitals for months on end, tried to trip me with fevers, blisters, sores, and pneumonia, drained my body of energy, blood, and immune system, but I was NEVER afraid because I'm not a VICTIM, I am an OVERCOMER through Christ who strengthens me. 

Josh

Day 162

Everything is going fine so far with the chemo.  I'm feeling fine and moving right along through the days.  I will go home on Saturday.  It is surreal that I am at this point, I praise God for getting me closer everyday.

Day 159

We're forming a team for Light The Night Walk and we hope you'll join us. Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

By joining our team and raising funds for this important cause, you'll be making a real impact on the fight against cancer. On Walk night, you'll join us with other teams and individuals from all over our community in the culmination of our efforts to find cures. Walk night is a family-oriented evening in which participants carry illuminated lanterns, raise awareness of blood cancers and come together as a caring community.

Every walker who raises $100 or more* will be a Champion For Cures and will be recognized on Walk night with:

• A Light The Night t-shirt
• An illuminated Light The Night lanterns in red (supporters), white (survivors), or gold (in memory of a loved one)
• A wristband which entitles the wearer to an array of food and refreshments.

*Patients and survivors will receive these items regardless of fundraising levels.

The link to the Road to Victory team is http://pages.lightthenight.org/sctx/AustinL15/RoadtoVictory
The walk is this Saturday at 5pm at Mueller.  Feel free to join the walk (whether you donate or not), donate, or both!

Day 159

I'm finally in the hospital for my final round!  My platelets were still low at 97 but good enough to start chemo.   I'm feeling great and had a really great last week and weekend with the family.  It was great to have a chant to feel good for a couple of weeks before this last round.

Now we need to get passed this one, smooth sailing!!  While I'm here, it is easy because the chemo takes a week or two for the full effect to take place.  The following weeks at home with cooler temps and cold season will need the most prayer.

Day 155

Well, my platelets are still too low to start chemo this week.   They want them over 100 and I am at 87.  I was as high as 91 this week but they dropped at bit.  So I will go again on Monday to get my labs done.  I was disappointed but what difference does 3 days make in the long run?  All my other numbers are going up and I'm feeling good. I am not neutropenic so life is much easier right now.

My finger is healing and didn't get infected!  Just need to get those platelets up and we will be good!!

Day 148

My numbers are still going up, just slowly.  I had some labs done today and they are not high enough to for sure start Chemo on Wednesday but I am hopefully they will be when we check again on Monday.  I am still neutropenic but I have some immune system, mejor que nada!

My CT scan showed that the original areas of inflammation are almost completely gone, but 2 new areas have now appeared.  I asked the pulmonary doctor directly if it is reason for concern and she said, "no".  I haven't completed the originally prescribed steroids, which clears up the inflammation, so I just have to stay on them for another 4 weeks.

Lip is not infected anymore, thank God.  That is miserable, and not much you can do to make it feel better.  But, this morning I cut my finger pretty bad while cutting some bread.  They didn't want to do stitches because it can cause more infection since I'm still neutropenic.  So, I am just washing it off 3 times a day with peroxide and keeping it wrapped tightly.  I think it will be ok since I have some WBCs, so I will do my best to keep it clean and dry!

My parents are coming into town for some fall weather fun.  Looking forward to a good weekend!

Day 141

Appointments went well.  My WBC is actually going up already, to 0.7 so it will be interesting to see if it maintained for fell back down when I get labs done today.  My lip is still infected but doing better each day, hopefully another sign my immune system is doing something.  No fevers either!

 The pulmonologist (lung doctor) wanted me to be on steroids for 6 weeks leaving the hospital, but somehow the hospitalist (doctor in charge while you are in the hospital) only wrote the prescription for 12 days.  SO, I have to start all over on my stinking steroids.  But, my oncologist (cancer doctor) didn't want me on them so long as it reduces your immune system and has many other bad side effects.

Long story shortened, I had an X-Ray done and it is perfectly clear.  No pneumonia.  Today I will get a CT scan done with dye, and if that comes back clear then I can stop the steroids!!  I am sure it will come back clear, results should be tomorrow.  They are all good doctors but that is why they call it "practicing medicine"  they all have different opinions.

Ok funny time.  My wonderful wife noticed, shocking I know, that they wrote SOB for the diagnosis on my X-Ray form.  So for many of you who have called me an SOB, or thought about calling me an SOB, your suspicions are now confirmed.

Hi my name is Josh and I am a chronic SOB.  Looking to start an SOB support group.  There has to be others, right?   

Day 138

I got two more units of blood and one unit of platelets on Friday.  It worked perfectly again to get the blood before the weekend to avoid having to go to the ER.  Everything went fine with the transfusions.  I think this gets me over 25 different blood transfusions since the start of all of this.  I have said it before, I know, but blood donation is so important and you don't realize how important it is until you are the one needing the blood.  

I am at the lowest point labs wise, 0.0 neutrophils, and 0.2 WBC so I am trying to be very careful not to get sick.  Of course, just like last round, I bit my lip and now it is getting infected so I am taking a different antibiotic to try and keep that from spreading.  The whole side of my face hurts and is swollen because I have nothing to fight it in my body.  Please pray that I don't get a fever!!

Otherwise, I am feeling good and excited that we are nearing the end of this round!  

Day 132

Friday I got two units of red blood which was great just before the hot weekend.  I was really feeling very tired, dizzy, and out of breath so it was just in time for the weekend.  Aaron had his first flag football game, which they won.  He did great!  

My platelets were low on Thursday, 48 but not low enough to get a transfusion Friday.  Today's labs were at 8, which is extremely low.  My nurse (she is wonderful) was very worried because at this level you can just start bleeding anywhere in your body for no reason and I am very neutropenic.  They thought about having me stay the day in the hospital while I got platelets just to ensure everything was fine.  Luckily, I didn't have to do that and just did the outpatient transfusion.  I got two units of platelets so that should get me until late this week.  

I knew my platelets were low when I hit the dresser while playing with my daughter.  Half your hand should not turn purple from a simple bump.

I get labs done twice more this week and see the doctor.  Please continue to pray for no fevers so I can stay this round at home!    

Day 127

Sorry for he delay in posting.  I came home Monday and have been doing fine.  My levels are dropping as they should and I will probably be neutropenic tomorrow when I get my labs done.

I am still taking steroids for the organizing pneumonia, I will be very happy when I can stop taking theses.  I am tapering down but still taking 4 pills every morning.  They make me constantly hungry so I feel like Cookie Monster all day.

Nom Nom!

Depending on how my levels are tomorrow I might get red blood Friday before the weekend and avoid the problems I had recently.  

Day 122

I'm doing well on chemo this week.  Today is day 3 and my second day of chemo.

They have been adjusting my steroids since they have to give me some to get rid of the pneumonia and to help my body during chemo.  They cut way back today because my WBC and neutrophils more than tripled.  They will all come crashing down in a few days but they don't need to be stimulating my blood cells that much, after all leukemia is a blood cancer.

My kids will come up tomorrow to have lunch so at will be amazing to see them.  And I am looking forward to feeling the cooler weather I am hearing about.  I am feeling good, after all I have been through everything else is down hill now!! 

Day 120

I am back in the hospital for round 3 of consolidation!!  After this one, only one left to go.  My lungs have felt better and I haven't had any fever, thank God.
My pulmonologist will just treat me while I am in the hospital this week with steroids, so that works out nicely.

https://emilymcdowell.com for really cool cards!

Day 115

Great news, I don't have a fungal infection or bacterial for that matter.  I have what is called "organizing pneumonia" Link Here

It is basically an inflammation caused by my body but not due to an infection.  It can be caused by trauma (I have none), after an infection (I have none), by medications (I have a lot!), or for no known reason.They still need to clear it because it is still pneumonia but it shouldn't interfere with my treatments that much.  Either way, doesn't matter because this means I can start my next round of Chemo next week.  I will go into the hospital for round 3 of consolidation on Wednesday in South Austin.

Funny thing, I have been waiting and working with the pharmacy to get my very strong anti fungal medicine refilled and they finally had it done today.  Good thing, I only had one left for today!  Well, as you can see from the picture below, it is not cheap.   No later than 10 minutes after picking it up, my doctor calls and gives me the news that  I don't need to take it anymore and can go back to the normal anti fungal meds.  The pharmacy won't take it back, due to FDA laws so sorry insurance company.  I tried.

Last but not least, Natalie got to come with me to get my blood drawn on Thursday.  She was so excited to see my blood (strange) and meet my wonderful nurse Amber.  She wants to grow up and be a doctor for doggies.

Day 113

Procedure was successful, no issues.  I am sore, about the same pain as the bone biopsy.  

It took about 1 hour to complete.  I had my new normal, 3 doses of margarita anesthesia.  No mentioning of Mandarin. 

My oncologist came and surprised me in the day surgery area, which was a nice gesture.  He expects preliminary results by the end of the week.  

Thank you for all your prayers and well wishes.  

Day 112

Tomorrow I will have a needle biopsy done on my lungs.  The results from the CT I had done yesterday were mixed, two areas looked like they have shrunk and one looked a bit larger.  They still don't know how to treat it since we don't know exactly what it is.

One of the areas is very near the edge of my lungs under my arm so they can easily get to it from "outside".  They will use a CT Scan to guide the needle into the infected area.  It will be great if they can actually determine what it is so we can kill it all before we do any more chemo.  I cannot have a lung infection and have all my levels go down again, it is too serious.  I should be able to go home tomorrow as long as they are no complications.

They will give me my normal anesthesia...I call them Margaritas.  I usually go for two, but I have been known to go for three rounds during the procedure.   I have also spoke to them in Mandarin after two Margaritas, which is also typical for me.  

The nurse usually gets flustered with me because I am still talking to her after one and I just switch languages after two.

Day 110

It is 6pm CT and this marks the first weekend out of the last 3 that I have not gone to the ER or spent in the hospital!  And to top that off, I am not neutropenic so I have actually been able to enjoy my weekend and get out more.  McKenna's aunt Judy has been here for a week and such a blessing helping with the kids.  McKenna and I actually were able to go and have a lunch by ourselves yesterday it was really nice.  For a few hours, it was like normal again!

I am doing much better since leaving the hospital, no more fevers and my chest has felt better.  I think it has cleared up more each day.  The anti-fungal medicine is hard but I am getting used to it.  Hopefully I can get off of it soon!

Tomorrow I get a CT Scan done on my chest to see what the pneumonia is doing.  Then I have an appointment with my oncologist followed by an appointment with my infectious disease doctor.  I should be able to get some good news on how all the cultures look and what I actually have in my lungs.

Thanks to all the all well wishes from around the world.   Mexico, Singapore, Canada, Colombia, Malaysia, UK, Sweden, Italy, China, India, Israel, and more are all actively on the blog!

Day 106

I'm home!!  I am tired and hopefully will have more energy tomorrow.  No appointments until Monday so continue to pray for no more fevers!  

12 days in the hospital is not fun, especially with most days having continual fevers, but now it is just a memory.  

Day 105

Still no fevers and if all keeps going well then I should be able to go home tomorrow!  I had a chest X-ray this morning at 3:15am (I don't know....) and it seems to have shrunk a little bit.  Also, a few more blood cultures have come back negative for fungal infection.  It still could be  fungal in the lungs, but we don't know yet.
I am staying on the antiviral and anti fungal melds but I get to stop the crazy strong IV antibiotics.  So ,  I should sleep better tonight and be ready to go home in the morning!

Day 104

No Fevers since two days ago at 4am!  

Even still I have to stay a few more days until my counts get better, and so they can watch me.  The blood culture came back negative on fungus but it could still be in my lungs.  These are still pending and should be done within the next few days.  All my levels are up but still neutropenic.  I have a little more strength and people say I look better now that the fever is gone.  

We still need to figure out what is in my lungs, that will plan many next steps.  Hopefully I can go home tomorrow or the following day.  This has been a long haul stay filled with endless tests.  But even so, God has held me tight.  This scripture my Mom gave me really nails how I feel: He laughs at fear and is not dismayed; he does not turn back from the sword. Job 39:22

Day 103

The bronchoscopy went fine.  The doctor noted how clean and healthy my lung tissue looked and she could not physically see any of the infection.  The infection is far down into the lungs so obviously couldn't put her scope there.  They are growing what they took out but it will take up to 2 weeks to grow so they are just giving me some different anti fungal drugs to see what works in the meantime.  

My latest X-ray showed the same thing in my lungs and it had not grown , and maybe shrunk a little.  

My labs are up!  That is the best way to beat this hing and move on.  My WBC is 1.3 and neutrophils are 0.7.   That is HUGE compared to 1 week again with both were nearly zero.

Today my fevers were he lowest since I came in, mostly fever free.  I spiked to 101.8 last night so we need to pray that I have no fevers tonight!!!  If so, maybe I can go home tomorrow and see Aaron off to his first day of 1st grade.  

Day 101

Jinga Fun with the Nurses!! 

Day 100 & 101

Yesterday my numbers dropped back down,  this is common during he recovery phase of the bone marrow. Fevers have been getting higher, 102.8, 103 and the lows with Tylenol have been in the 100's.

My oncologist decided to do another X-ray because I had a very slight caugh.  You have to tell them literally everything you feel as it might be important.  The first two X-ray they did earlier this week were perfectly clear, even commenting on how great they look.  But the third one should some sort of infiltrate , or phemonia.  She also set me up with an infectious disease doctor. I was actually excited for them to find this, that means they can treat me and kick this fever.  They did a chest CT scan with the die yesterday and I hope to hear the results from the infectious disease doctor today.  They also set me up with a plumonary doctor that will sedate me today and put a scope down my throat into my lungs and take some of the goo out.  Then they will grow it and see what they get.   Since I have been on such high powered antibiotics for a week, with no improvement, they are concerned it is a fungal or mold infection.  Either way they can still treat it and give me the specific drugs I need to get better, which hey have not been able to be this whole time.  No eating or drinking all day until after the procedure at 2:30pm.  Sigh!

Finally, my ear hurts so I got an ENT stopping by later.  So it will be very busy.  One more cool thing,  when I got my red blood cells there was s tag that said m = antigen so the blood bank identified the antigen that gave me my reaction and now my blood is screened against that.

Day 99

This morning my fevers had been lower, 99.5 ish but around 4pm they spiked about 101 again.  The good news from today is that my red blood and white blood cells are both up!  My red is 8.5 up from 8.2 and my white is 0.7 up from 0.3(more than double).  We are praying they stay up tonight and continue to climb.  That will help me get out of the fevers as I will have an immune system to fight off and attack.  Praying that tomorrow is the day the fever breaks!

Day 98

Still having fevers with and without Tylenol.  The Tylenol keeps the temp down and keeps the chills and shakes away.  I have to go off the Tylenol every 4 hours so they can see how high my fever gets.  Last night I got to 102.1 .  Nothing changes in my treatment,  I still get very strong antibiotics 4 times a day via IV .  We just have to wait out the fever.  The doctor said it is good that I look good and mostly feel good because if I had a big infection I would look much worse.  The fever will break soon, it has no choice!

Day 97

Quick update:  Another weekend and another ER visit and hospital admission.  I bit my lip on Tuesday and it seemed to be healing ok but in Friday night it started to get infected and my lymph node under my neck was hurting.  So I called the doctor and she told me to go to the ER, quick 1:30 hour visit and some penicillin later I was home again.  Of course as soon as I got home I started to get a fever.  I waited it out for a while but it got too high so I called the doctor again and she admitted me to South Austin.  Thanks to Faiza and Mehlam for watching kids during the ER visit and for driving me to the hospital at 8pm.  I have been here since Saturday night.  They did chest X-ray , blood and urine cultures, cat scan of my kidney (I still have that stone!), and everything came back with no infection.  I am very neutropenic, 0 neutrophils and only 0.2 WBC so I have to stay until my fever breaks.  As soon as I stop Tylenol  my fever spikes.  I am praying that tonight will be my last night and I can go home tomorrow.  They are giving me two different strong antibiotics around the clock to ensure nothing spreads or grows.  I got some red blood yesterday, I was at 6.9, the lowest I have ever been.  I will get platelets tomorrow.  So far it seems to just be a neutropenic fever , a fever just because I have nothing and my body is trying to protect me.  Please pray it leaves soon!

Day 93

Yesterday I got two units of platelets and had no issues.  My doctor went ahead and gave me two more units since I had been bleeding and my levels would just drop down lower again.  That is really nice because it means I shouldn't need any more until next week and will be fine over the weekend.  I will go again tomorrow to get labs done and hopefully won't need any more red blood this week.
I am feeling good, tired, out of breath, but otherwise good.

Nice big bag of warm platelets

Day 91

I am home!

Yesterday and into today I have continued to feel well.  Much better than Sunday.
They confirmed it was a blood transfusion reaction and my reaction is over with.
They did my labs at midnight last night so they could order the blood for me first thing in the morning which was great.  I was receiving my first bag of red blood at 2am this morning.  It was a bit hard to sleep with the constant monitoring but it meant I was able to go home this morning instead of this afternoon.   They gave me Tylenol and high dose IV Benadryl ....which made me so sleepy I couldn't go back to sleep very well at 2am.

Happy to be home! 

Day 90

 I need to update everyone on my busy weekend.

Saturday -   I went to the emergency room in round rock for chest pain.  I had never had it before like this so my doctor said they needed to check it out.  They did blood tests and my platelets we at 12, very low.  Below 10 your body can just spontaneously bleed externally and internally.  I couldn't get the platelets I needed there because they didn't have irradiated ones and with the weekend it would take many hours or a day to get them.  I could just wait until I saw my doctor on Monday.  They did an EKG , chest x-Ray, and chest ct-scan which all came back perfect!  I knew I was not having a heart attack but with my condition people can go from good to bad quickly so everything has to be checked out, even if it makes me feel dumb.

Sunday - I woke up with blood in my mouth and new bruises on my hand and legs.  I gargles with salt and baking soda mixture to try and help stop the bleeding.  After about an hour and a half of continued bleeding I decided to go to the ER in south Austin where they would better take care of me. After 3 hours and some forceful negotiating I was up on the oncology floor for outpatient blood transfusion of  2 units red blood and one platelets.  About 1 hour into my first bag of red blood I started to get cold and the chills.  This is how a neutropenic fever starts so I told my nurse and we watched it.  I started to shake like a crazy man and had a splitting headache so the doc gave me two Tylenol which didn't help.  An hour later the fever came on even with the Tylenol , getting up to 102. My heart rate was high, around 130, I am usually 60-70. Because it was the weekend , and I was just a simple outpatient , it was very hard to get the on call oncologist on the phone.  At this point I need antibiotics ASAP in case of infection and meds to counteract any reaction to the blood.  About 30 mins later I had the worst chest pain of my life , so I called nurses which caused them to turn into superheroes.  They brought in the chest machine with paddles , EKG,  and a bunch of other meds.  My heart was, and is, fine. It was just part of the reaction to the blood.  They had to keep calling doctors to get orders and finally got me IV Benadryl and steroids to counter the response to the blood.   I have had IV Benadryl many times before but this time is made my vains and brain feel like they were on fire and fuzzy.  I yelled at the nurse "what did you put in me?"  He replied " just Benadryl , I think it is working on your blood and you really needed it."  I finally started to feel better and crashed for the night.  I woke up at 2am all wet and my fever broke.

This morning I feel great!! My platelets are up to 39 and red is 8.1, so I will get some tomorrow hopefully.   They admitted me last night, obviously, and will keep me today and tonight just go be safe.

God is great, even though I had to fight to get where I should have been, He had his perfect timing for all of this to happen where they can expertly take care of and fully know my history. I can't imagine having to do this at home and call an ambulance .

Day 88

Hi Everyone!  I have been neutropenic since Wednesday of this week.  My numbers were very low yesterday which feels quicker than the last round so maybe I will recover quicker?  I will go again Monday and three times a week to get my levels tested.  I expect to get some platelets and red blood next week, I could have gotten some on Friday but I would rather not get blood unless I really really need it.

The gross chemo feeling is mostly gone from this round.  Now I just feel weak with my levels low.  Which is good because I would rather feel weak than chemo-ish!  :)  So now we are being careful and staying germ and fever free for the next several weeks.   

Day 84

I am home!  I got good sleep last night, no one woke me up at midnight, 3am, and 4am so that made a huge difference.  I am not neutropenic yet, so I am trying to get out a little bit while not having a mask and stay away from crowds.
I will go twice this week to get my labs done and start the process all over again of checking labs and recovering.

God has been so good to me through all of this.  I see many people in the hospital at their bottom and without hope, although I might not feel good, look good, or sometimes even feel anything at all, I am always set apart and so far above anything that could be considered rock bottom.   Psalm 139: 7-12

Here is a great quote that I found and like

Day 82

Last day of chemo for this round!  I am still doing ok, getting a little bit slower and feeling the effects a bit more.  Tomorrow I go home!!  Yeah!

I don't have any cool pictures today that are chemo related, so here is a picture of a hummingbird.  :)

Day 81

Yesterday I had my second day of Chemo on day 3 in the hospital.  Today is my rest day, so tomorrow I will get my last round at 4pm and 4am.  Then on Monday, go home!!

I am doing well, up and moving around a lot.   I even played a little poker with an old man ( I won, of course).  No side effects yet, those usually start next week.  Pray for good sleep tonight!

Selfie with Wall-E

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!  :)

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.

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.  :)

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!  

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!  

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

 

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.

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.

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!

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!