I Think I Live at Loyola (or My Home Away From Home)

I can’t see boring anyone with too many details.  They bore me.  What I will try to do is summarize my life with MDS since the last big post.  First, about the latest biopsy.  It did show that treatments I have had thus far did something to the bone marrow, but not enough for any real improvement.

At Loyola University Medical Center (Loyola Medicine), there is the Cardinal Bernardin Cancer Center and within, is a lab (CC Lab), the Day Hospital mainly used for chemo, some clinics for doctor appointments and an area called the High Dose Treatment Unit (HDTU), commonly called High Dose.  High Dose is my home away from home these days.  In January, I went to High Dose just about every day.  In February and March (until last week), I went to High Dose every day.  High Dose is where I would get the blood and platelets and often, the IV antibiotics I needed for the infections I am fighting.

High Dose has its advantages.  But its not all perfect. They have a lounge for patients where you can find coffee, soda, crackers, sometimes sandwiches, almost always bagels after the sandwiches run out.  The rooms are one-person rooms. I can tell you that Channel 5 does not come in on the TV in Room 10, and that there are 2 rooms with broken reclining chairs.  The recliners are important.  Laying in bed gets rather old real fast and the recliners are quite comfortable.  Feet and seat-back adjust individually.  No functional handle makes the recliner useless if you want to put your feet up.  I’ve had the staff replace the broken recliners with working ones from another room and/or made them move  me to another room.  Of course, I asked nicely.  The people working in High Dose, the patient care techs, nurses, etc. are really good.  I only got pissed off once where I had a few choice expletives come out of my mouth.  I think it had to do with platelets slow to come up from the blood bank.   Extra slow!

I lied a bit.  I didn’t really go to High Dose every day.  I used the Day Hospital for a week of chemo (Decitibine) and I spent 16 nights in the hospital over four separate hospitalizations (Pneumonia – 3 nights, Neutropenic fever – 3 nights, Blood stream infection and pneumonia – 6 nights, Neutropenic fever –  4 nights.)

On my first stay in the hospital, I celebrated New YeAmicarar’s Eve at midnight by squirting a dose of Amicar into my mouth.  It wasn’t better than champagne and my wife wasn’t  around to kiss. Kissing isn’t good when you have an infection and a fever.

During one of the stays in the hospital, I had a double lumen tunneled central venous catheter (aka, Hickman or Apheresis catheter) inserted for future stem cell transplantation and desensitization from antibodies I have built up getting all these blood transfusions.  I also have a PowerPort buried in my chest on the other side.  That’s been there since May, 2016.  I had all three of my ports in use at the same time. Who cares.

On another hospital stay, I had a bronchoscopy because scans of my lungs showed changes from earlier scans.   Pulmonology and my doctors wanted to determine what the changes were.  At least nothing cancerous was found … after my years of smoking (stopped 20 years ago.)  It seems that I have a pneumonia and some kind of infection going.  Cultures on the infections keep coming back negative.

I’ve been on antibiotics (oral or IV) since my first stay in the hospital.  I’ve also been taking anti-virals and anti-fungals.  At times, I’ve been taking two different antibiotics at a time.  Cyndi has learned to give me IV antibiotics at home. She was a little shaky and unsure of herself at first, but now, is a pro.  I had a staph infection at one point, have some cellulitis near the apheresis port (improved greatly) and who knows what kind of infection in my lungs and of course, the pneumonia.

After the last hospital stay (I came home on 3/15,) it was decided that I shouldn’t need to go to High Dose every day.  GREAT!  The first couple of days at home a nurse came and drew some blood.  Saturday, I went to High Dose, was given a change of antibiotic from IV Vancomycin to IV Daptomycin.  I tolerated the Daptomycin well and after seeing the doctors was prescribed the Daptomycin for the next 14  days.  The home version of Daptomycin I am getting is a simple syringe with the drug instead of a bag. Cyndi will not have to hook me up to an IV bag, but will give me the dose via an IV push into one of the lumens over about 5 minutes.  No big deal.  She has to flush both lumens anyway. I hope this drug helps with the infections.

To boost my white count and neutrophils, I am also now giving myself injections of Granix.   I did let Cyndi stick me once.  She’s able and willing, but it is easier for me to stick me, so I do it.  After a week of injections, the white cell count and neutrophil count has gone up considerably.  The doctor has cut my dosage down from every day to every other day.  That’s great since my stomach is quite bruised from the injections – 3 sticks each time because of the way the drug is dosed.  Blame the bruising on my low platelets. Anyway,  It is getting easier to find a spot to stick myself:  I just look for bruise-free areas!

I think I am caught up on my status and hope I wasn’t too boring or annoying.




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