Decided to put it all together and included all the missing stuff from the 2ndlight outage, , , ,.

Sunday, 6/3/2018: Flew to Nashville from Orlando.

Monday, 6/4/18: Checked in and got my schedule for the week. Met a few New Guys like me and a lot of folks in various stages of their own multi-month process. Very good group of people! The patients, staff and care givers operate like a big family unit.

First, went down the hall for an EKG, then down to the radiology dept in the "basement" for a chest X-ray. Back to the 2nd floor to the Bone Marrow Transplant dept (BMT) to draw 20 vials of blood for labs. Then down to the first floor for pulmonary testing, then back down to the basement for a nuke med MUGA scan. All-in-all, not too bad of a day. Got back to the hotel about 2:00 PM. Of note; all of the BMT Registered Nurses and Nurse Practitioners are VA, all of the BMT doctors are Vanderbilt. Probably no better place in the country to go through this.

Tuesday, 6/5/18: Off day!

Wednesday, 6/6/18:

Reported to the basement at 7:00 AM for a nuke med PET/CT scan. Then back to the BMT Dept to give a little bit more blood and to talk with the Social Worker. Then my most favorite thing; a bone marrow biopsy!! Lovin it! Hardly felt a thing.

Thursday, 6/7/18:

Reported bright and early to the BMT for a de-brief, and an overview of my upcoming schedule with my Nurse Practitioner (NP). Blood labs, Complete Work-up looking for anything/everything; nice and clean with the only thing showing was that I had been exposed to Chicken Pox (had it when I was 6), I'll take a med for a year after this and then get a Shingles vaccine. IF you have had chicken pox, you are undoubtedly carrying some shingles in your system and, as such, after the upcoming chemo, you will be almost certain to get shingles if you do not take your meds! PET scan; clean as a Safeway chitlin! Bone marrow was not back yet and they need to check it to see if I've had any chromosome damage from the prior chemo. Then had a good meeting with my BMT Doctor.

Friday, 6/8/18: Off day.

Saturday, 6/10/18 NOTES: All the fun stuff starts Monday!

Monday, Tuesday and Wednesday I'll be given shots in my belly of what is more-or-less the same drug(s) used in Neulasta to rapidly stimulate my production of white cells. The dose will be twice that which is given by the On-Body Injector they used on me after each CHOP chemo session. Two shots at a time. No Big Deal other than the fact that my bone marrow will start producing white cells faster than they can get out of my bones and into my blood stream. This will result in various levels on "bone pain" as my bones will more-or-less want to swell from the excess load of white cells!!!! They gave me a prescription of straight Oxy for the pain, along with the warning not to take ANY over the counter drugs that could/would hide/mask a fever! Sounds like ecstatic amounts of fun!

Then, on Thursday (6/14) even more fun! Even though I already have a Power Port hooked into my right jugular vein, I get to go in for out patient surgery to have an external catheter put into my right jugular vein!!!! Oh Boy, Golly! I've wanted that since I was a little boy. Not! But, the fact is that they need to have two (2) access points to perform the collection of white cells and stems; one to suck blood out, and one to pump it back in. Hardly felt a thing, I was conscious, although knowing what they are doing is rather unsettling! I'll be hooked up to something very similar to a dialysis rig for up to 6 hours for a day, or two, for the white cell collection process. CORRECTION: The catheter has two lines/ports (one out, one in), my Power Port is too small for the flow of blood they need (about 100 CC a minute).

I'll have a couple days to recover from the above and then will go in the hospital as inpatient to receive the High Dose chemo that will virtually kill all of my white cell producing bone marrow and otherwise reduce my immune system to ZERO!.

Tuesday 6/12/18 NOTE: Woke up this morning a little "achey" here-and-there. One of the BMT patients that I see everyday here at the hotel told me that, given his experience, I should expect to begin "hurting" this afternoon. He told me to not hesitate to take some pain med as soon as I think it "hurts" and to not make the mistake of thinking that I can get past the pain without the Oxy. He thought he could, and now regrets it because his pain got to the Oh Mommy stage.

Wednesday 6/13/18 NOTE: The "belly shot" drug got to me last night. Got very uncomfortable. Some good pain that pulsed with my heart beat, but not too bad, maybe a 6 on the scale. Mostly in my sternum and my lower back (hip bones). It comes and goes and is otherwise not too "constant". The Oxy seems to take care of it pretty good.

Wednesday 6/13/18 UPDATE: Got my last "belly" shots this morning, so far, so good. They made a point of asking me if I had "bone pain" yet, "ya, there were a few rough times last night, , , ". "GOOD, that means everything is working as it should!" Hmmmmmm, first time I've ever been told that pain is good and no pain is bad!

But, otherwise, one of the New Guys I checked in with last week has been hurting like a Mother and yet he did not have a high enough white count to start collection. He had to go back Monday night to get the "9 PM super shot" which did the trick.

Lots of guys and gals in various stages, as I said before, but not all is good. Talked in the waiting room with an old Vet who is almost done but has terminal leukemia, he's going through BMT to try to get another 3 years. Shit! What can you say to that when you've already been told that you are A OK?

And, one of the other New Guys I signed in with is on "hold"; his PET scan last week found "something" in his neck that was not there a couple months ago. Shit!

And, as I'm typing this my lower back is going off big time. Time for the Oxy!

Thursday 6/14/18: Freaking crud! I went through all the blood labs this morning and then went into Interventional Radiology surgery to have this darn catheter put in my neck, then got back up to BMT to find that my white count is not high enough yet!!!!! I have to go back tonight at 9 PM to get the $7000 Super belly shot and be back at the BMT bright and early tomorrow morning for collection. Oh and, just for good measure, two more of the "regular" belly shots!


Saturday 6/16/18: Got the catheter taken out of my neck this morning; did not feel a thing. Got the stem cells collected yesterday. Sat in a recliner for 5 hours while my blood was pumped, filtered and recirculated at 100CC a minute. With about 10 minutes to go, the lady from Vanderbilt showed up with her "cryogenics cart" and prepared to take my stem cells over to Vanderbilt for processing and freezing. Everything is good. They needed 2 million cells minimum, they got 4.6! Plenty left if they need to double me up during the transplant and, otherwise, I have donated any excess to Vanderbilt.




Thursday 6/21/18: Had my "post collection" meeting with my NP this morning. Everything is good-to-go so, I'll go back on the 27th to have the "pick line" put in my arm for the chemo and transplant, then meet with my Vanderbilt transplant doctor. Then I check in on the 28th as inpatient to have 5 days of very high dose chemo, then the stem cell transplant after that; 5 days of chemo, one day off, and then on the 7th day (Zero Day) I'll get my stem cells back.

Wednesday 6/27/18: Got my dual PICC line installed in my left arm this morning. Not near as bad as you might anticipate. The nurse feels around, looks around, for a good vein, marks "the spot", then takes out a tailor's type tape measure to measure from the spot on your arm to the required PICC termination point on the right side of your chest, just above the heart's Right Atrium (about 15 to 18 inches). She trims the lines to the appropriate lengths. A couple pricks of local anesthesia, you're good-to-go and before you know it you have a brand new PICC line. Hardly felt a single thing. I go in as inpatient tomorrow morning and start 5 days of intense chemo on Friday (6/29). I could be in the hospital for up to 3 1/2 weeks if I don't have a "care giver".


Thursday 6/28/18: I'm "in"! The bone marrow unit has its own isolation ward. The entrance to the unit is double doored; the second door will not open until the first one is closed. The food trays are delivered through a cabinet to the rooms so that the food service folks don't come into the rooms. The rooms are under constant positive air pressure; everything blows out, nothing blows in.

Chemo starts bright and early tomorrow morning.

Saturday 6/30/18: Everything is Ok. 1st chemo yesterday, 4.2 total liters of IV fluids! Pee, pee and more pee! Started the same thing this morning at 5:30 AM. The more pee, the better, the main drug can be very harmful to the bladder so do not hold it in. They are giving me Mesna to protect my bladder from the cyclophosphamide in the chemo which can begin to destroy the lining of your bladder (they call the cyclophosphamide "Cytoxan" which is kind of unsettling to think that a "medicine" is being called "toxin"!!!!!). Prior to Mesna they would have to put a catheter into your bladder and monitor your urine for signs of blood!

Sunday 7/1/18: OK. More chemo today. Today is T Minus 4 till Transplant!

Monday 7/2/18: Had a terrible night with intestinal cramps. I was/am in tears. They've started giving me 10mg Oxys every 4 hours for the pain. Oh Mommy! Oh and, did I mention that my "system" has been turned inside out!? As I was told when I checked in as inpatient; ", , , , there is no modesty in BMT, , , ,"!!!!

Wednesday 7/4/18: I'm down for the count. Big pain. Oxy is helping.

Thursday 7/5/18: Got my Stem Cell Transplant and everything is going as planned. Got five (5) stem cell "pushes" that Vanderbilt prepped. They were frozen but, were thawed in the room. A part of Vanderbilt's process puts a smell of "creamed corn" to it all! Lots of lolly pops during the "pushes" so not much smell or taste.


Saturday 7/7/18: Just got a unit of blood because some of my "numbers" were too low.

Sunday 7/8/18: Everything is going OK, other than the chemo is already working on my hair! Getting ready to shave my head.

Tuesday 7/10/18: Another blood transfusion today with a bag of platelets. Nothing wrong, part of the process. This is Day +5 and all of my blood numbers are pretty much at zero. Tonight's 2 am labs should show my "numbers" going up. While the guys are here as inpatient all the wives/girl friends/sisters are out shopping and seeing the sights.

Wednesday 7/11/18: Got another unit of blood today. Doing good.

Thursday 7/12/18: Just saw the "team" doing their morning rounds; Resident, Pharmacist, Bone Marrow doctors, my nurse for the day, and the Social Worker. Yay Hoooo! My ANC (Absolute Neutrophil Count) has finally gone from Zero to 0.1. It is expected to double every day now. I Can Not be discharged to the hotel until it gets past 0.5!

Friday 7/13/18: I was wrong about the "ANC", it is the total white count that matters instead! My white count yesterday was 0.12. Today it is 0.32!!!!!!! And, my red cells and platelets have remained the same which means I am making my own, no more transfusions!!!

Sunday 7/15/18: More good news; my white count went from 1.27 to 4.69! My platelets went from 9 to 31! and, my ANC went from .4 to 2.6! Thank everyone for their prayers. Might get "out" tomorrow!

Monday 7/16/18: FREE AT LAST after 19 days! I am at the hotel as "out patient"!!!

Tuesday 7/17/18: Saw my Doctor and NP this morning. My labs this morning are excellent and both of them say I'm making a lot better progress than expected!

Monday 7/23/18: BIG step today, got the PICC line out of my arm! No more IV drugs, fluids, etc.

Tuesday 7/31/18: Yay! My 'Departure Conference" is Thursday morning (8/2/18). I fly home Friday (8/3/18)!

Thursday 8/2/18: Had my departure meeting with the Director of the BMT department. I'm doing excellent but, I must still be careful around crowds and such for at least until after my "100 days". Talked through all of the other precautions and such. I will not have to return to Nashville unless I develop serious problems. The BMT group will follow me for the rest of my life but, for "day-to-day" things the local VA will take care of me. IF, IF, IF, the lymphoma should come back, I have been identified as a candidate for the brand new CAR-T T-cell treatment.

Friday 8/3/18: Got home about 6:15 PM!!!! I am so happy to be home, that was a long 2 months. Got to hug and kiss my wife!!! My Springer Spaniel, Carlee Ann, screamed and cried, and otherwise would not let go of me until she was sure that I was staying!

Friday 8/10/18: Had my first follow-up with the Transplant NP at Lake Nona today. Blood labs are very good, "almost" as good as "normal". Lots more "+100 Days" testing to come. Scheduled a follow-up with my VA Oncologist.


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Dora Hates You

Edited: 11/05/2019 at 10:01 AM by dingpatch