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