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Topic Title: My consolidated Bone Marrow Transplant blog
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Created On: 08/11/2018 08:55 AM
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 08/11/2018 08:55 AM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

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 left 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, 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 last night!!!! 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.


Edited: 10/09/2018 at 09:43 AM by dingpatch
 08/18/2018 06:59 PM
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ww

Posts: 14715
Joined Forum: 08/17/2007

The "short" version is impressive for squeezing two really eventful months into so little space. More uneventful visits to Lake Nona! The last time I was much of a specimen was at a university infirmary attached to the med school's hospital, where a morning swarm of students or whatever gawked at my swollen arm from a wasp sting.

Edited: 08/18/2018 at 07:46 PM by ww
 08/20/2018 10:59 AM
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wtf

Posts: 3553
Joined Forum: 11/23/2005

Gnarly! Best of luck you you, man. Hope you receive nothing but good news going forward.

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trump - putting the 'con' in conservative
 08/22/2018 03:49 AM
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Central Floridave

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Joined Forum: 07/22/2003

That's crazy. I wish you well. I couldn't read in detail or look at photos as I'm needle shy!
 08/22/2018 06:02 AM
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waterlizard25

Posts: 424
Joined Forum: 07/18/2012

Brave soul brother. Keep fighting!
 08/22/2018 07:01 AM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

"Needles"!!! Ha, ha! You learn to get over that real quick.

Surprisingly, there were a few guys who, despite of all of their previous cancer chemos and "treatments", were very upset over the prospect of getting the catheter in their neck!
 10/09/2018 09:34 AM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

October 13th will be Day 100 for me since the "transplant" (7/5/18).

I'm feeling a whole lot better but, I'm still not anywhere ready to run a mile. LOL!

My hair wants to start growing back so, I have not "shaved" my head for about 3 weeks. Although, my "hair" is taking its time coming out! I had more "fuzz" on my butt when I was born than I now have on my head!

No more 1 PM naps but, I still have times when I just want to "sit" for a bit. That chemo was a real mother.

Had my first follow-up on 9/11/18 with my VA Oncologist at Lake Nona. Just SOP. Will be seeing her every 3 months, with blood labs, until she gets tired of me! LOL

Edited: 10/09/2018 at 09:46 AM by dingpatch
 10/09/2018 07:03 PM
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ww

Posts: 14715
Joined Forum: 08/17/2007

At a certain age, naps are entitlements. Watch the ears. Hair seems to grow on them ever more enthusiastically. Old Vikings, if there were any, must have had shiny heads and ear beards.
 10/10/2018 05:15 AM
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waterlizard25

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Glad to hear your doing better Ding! WW that was funnnnyy
 10/10/2018 05:48 AM
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johnnyboy

Posts: 14691
Joined Forum: 07/22/2003

Dude, that was an epic life or death battle. Well done.

-------------------------

"One of the reasons why propaganda tries to get you to hate government is because it's the one existing institution in which people can participate to some extent and constrain tyrannical unaccountable power." Noam Chomsky.

 10/12/2018 06:38 AM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

johnnyboy,

Thank you for your concern but, the whole thing was done to hopefully keep the lymphoma from recurring for a third time. I was already in complete remission when I went to Nashville.

As the Department Director in Nashville told me earlier this year before I made the decision to go, ", , , , it's your decision but, IF this lymphoma comes back for a third time, the treatments you will have to ENDURE are going to be TERRIBLE compared to what you have already been through, , , ,!" SEND ME THE TICKET!

Edited: 10/14/2018 at 12:20 PM by dingpatch
 10/12/2018 11:11 AM
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johnnyboy

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That's the call. Every now and then I complain and exaggerate the petty small things in my life and imagine that its all so big. And then you read this and remember how really small that stuff is. Keep fighting the good fight.

-------------------------

"One of the reasons why propaganda tries to get you to hate government is because it's the one existing institution in which people can participate to some extent and constrain tyrannical unaccountable power." Noam Chomsky.

 03/17/2019 08:17 AM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

Keeping you in the loop.

I've been doing OK and have pretty much fully recovered from "The Process". Still a "few" things.

My latest P.E.T. scan was clean as a Safeway chitlin. Everything is good there.

I've been doing pretty routine blood labs and everything there is also clean with no "bad stuff" found floating around!!

But, , , , I have been up-and-down with a touch of "anemia". One one-hand that in itself is not too bad and is sort of an after effect of the Transplant. BUT, , , , , at one point recently my Hemoglobin did get low enough to be of moderate concern. But, it has since gotten a lot better. The normal "count" for man of my age is 12.4 to 14.9 gm/dL. I was getting down to a little below "10" but my labs this week were 11.9. So, as such, my Oncologist says that that is pretty good and we will "go with it" but, always more routine labs every couple weeks/months. IF my counts had remained at below "10" there would be a requirement to have another "bone marrow biopsy" where they drill into a hip bone to extract some fresh marrow and fluid. They have never been painful for me but, that whole deal is just plain old uncomfortable.
 04/07/2019 07:18 AM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

So, one of the down-sides from the intense chemo last July is that I have been easily "chilled". Not too bad but for the last couple of months it's always been handy to have a light jacket with me. I have had the heat on set at 76-77 on those mornings when the house got down to 72-73!

On the other hand, , , , the house was closed up yesterday and it got up to 82, and I was just fine. Just might save on some electric this summer with a higher setting on the thermostat!

And otherwise, , , , on a side note, , , , my roof's shingles were getting pretty "worn". The roof in-and-of itself is structurally good. So, the pro painter across the street told me that I should consider putting down a coating of the white elastomeric roof coat/sealer. OK, sure. Went to Lowes and got the product from Black Jack. It works like a champ!!! It in effect glues down all of the loose shingle tabs and provides a water tight seal. In the noon sun the untreated shingles will burn your hand, while the coated area was just "warm". I'm told to expect up to a 20% reduction in inside temperature and cooling costs!!?? We shall see.
 04/07/2019 05:40 PM
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Cole

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They scienced the shit out of you! Now don't go getting hit by a bus or some other dumb thing after going thru all that BS.
 07/12/2019 01:33 PM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

So, as I told you in a recent "Birthday" thread, last Friday (7/5/19) was my Second First Birthday. One year since my transplant.

Went to see my VA Transplant Coordinator this morning (7/12/19) for my "One Year". Everything is going according to plan and schedule.

Started to get all of my vaccinations replaced today! It was a surprise to me because I thought that today would just be a normal "checkup" and then a "talk" about the vaccination schedule. The "Close To Death" chemo last year wiped out all of my previous inoculations. Today was Pneumococcal Conjugate (Pneumonia), Hib (Haemophilus influenzae), Polio, Tdap (Tetanus, Diphtheria and Pertussis [Whooping Cough]), Hepatitis B, and HPV (Human Papillomavirus). I am, as the VA considers me to be, "ilmmuno-compromised" so I need to start getting all of my "shots" ASAP. Today was all of the more important ones.

That's just a "start" and I go back in 8 weeks for more, then again, and again, and again, , , , if there's a vaccination for it, I' going to get one. I hope I don't get Autism!!

Edited: 07/14/2019 at 04:56 AM by dingpatch
 08/03/2019 02:39 PM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

Today (8/3/19) is one year since I got back from Nashville. Time flies, , , ,

The vaccinations kicked my ragged butt! I was down for the count all the following week. I AM NOT looking forward to getting some more in October!
 08/03/2019 04:16 PM
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ww

Posts: 14715
Joined Forum: 08/17/2007

I've been lucky with the latest immunizations, the new shingles and hepatitis A (first dose of two).
 08/03/2019 05:40 PM
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dingpatch

Posts: 13796
Joined Forum: 07/24/2003

Shingles, Hep A and Measles are next, along with what ever they want to "throw in". They told me that if there is a vaccination for it, I'm a gonna get it, , , ,.
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