UPDATE, , , ,

Saw the Health First Oncologist yesterday morning (9/21) for my first chemo follow-up. Good, and bad.

No, nothing wrong, I'm OK, and am still expected to be just fine. "How's this?", "how's that?", "that is due to the Prednisone.", "this is due to the one part of the chemo.", etc. . . But, my VA Oncologist is still concerned about my Lymphoma being a "comeback / recurrence" rather than being a "new" case and, as such, she has pushed for "The Complete Monty" in my treatments; Cage Match Chemo, bone marrow transplant, etc. . . .

My Health First Doc does not feel that it is warranted because it has been 5 years since my last "problem", but he is proceeding with checking all of his boxes:

> He is going to consult with two (2) of his Lymphoma expert friends in Europe.
> He has put me in for a "Bone Marrow Consult" at the VA (for possible transplant, etc, , ,).
> He is lining up for me what I should expect if I do in fact have to be admitted to Holmes for inpatient Cage Match Chemo.

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Dora Hates You

Do it all and kill the bitch off for good.

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I was right.

Random notes, , , ,

Swelling in the mouth? Yep, sure, doing that too. Perhaps not too big of a deal, but, , , , you know how your gums and/or tongue gets cut-up/irritated when/if you chip a tooth? Yep, every single little chip, nick, crack in my teeth have worked my mouth raw. It is "subsiding" now, but Wednesday was a mother.

Constipation? Yep, sure, been there, done that, I even made my own Tee Shirt! Not too bad this time (so far). Everything seems to be slowly working, just very solid (if ya know what I mean). Found a broccoli salad at Walmart that seems to move things along. Last time, 5 years ago, I had to call the "on call" line about it at 2 in the morning. I was actually in tears. The on-call Oncologist called me right back and told me to chug some Miralax and wait for it to work, but that if it did not work, go to the ER, but that my expected experience in the ER would probably be a lot more unpleasant than my current one!

Drink lots of fluids? Yep, that too. Your body starts working ASAP on getting the chemo out. Big, big, urge to pee about every 2 hours, all through the day and night. And, at times, it is a "right now" thing, with a pretty fair amount. Drinking bottled water as I can.

Keep your weight up? Ya, sure, but NOTHING tastes all that good. Not that it tastes bad, it just does not taste. Luckily, I have not been nauseous at all (so far). Taco Bell with lots of hot sauce is palatable. Had some chicken tenders last night, actually dripping with Crystal hot sauce and agave nectar. Jalapeño potato chips have a faint flavor of "something".

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Dora Hates You

Sorry for your discomfort dingpatch, hang tough and when it is over you will be back stronger than ever!

UPDATE: I WAS ON THE EDGE OF FUCKED AND HAD NO IDEA I WAS HANGING TEN OVER A CLIFF, , , ,!!!!!!!!

The constipation mentioned above worsened and came to the point of complete. It seemed that the Miralax was doing nothing. And, all of the grunting-and-groaning and pushing while trying to pass the tiny rock hard turds that where there made my anus as tender as if you had worked it with a dry corncob! I could not take it anymore.

So, last Tuesday (9/26) sent my PCP a message and I cleaned up a bit and did a walk-in with my PCP at the Viera VA Clinic. The PCP's nurse takes me back and tells me that she had left me voice mail and that I should have called her back before I came in. When I had looked at my phone I had seen that there a missed call, but no voice mail ( the V-Mail was still recording). No matter, here I am. The Doctor needs to know what, and how much, you have been taking? Miralax, 4 doses since Saturday night, (filled to the line in the blue bottle cap). Well, chat, chat, chat, , , , you know it could be over 2 hours before he can see you? Yes, but here I am, and I'll wait as long as I need to. Well, OK, I'll take your vitals, Blood pressure, OK. Oxygen and pulse, OK. Temperature, , , , OH, you have a 102.8 fever!!! He's going to see you right away. Go have a seat. Within 10 minutes I'm in his office. Your constipation is only interesting right now, but your fever is of very great concern, you're going straight to the hospital. I'll wheel you over to the Triage Unit where we'll wait and see where they want to send you. It was only about 15 minutes and he came back and told me that transportation was being arranged to get me to the Lake Nona VA Hospital ASAP!

So, I get to the Lake Nona ED (Emergency Department) and they take my blood, vitals. My fever had gone down with the Tylenol they had given me at Viera, but it had gone back up to 99.9, so more Tylenol. OK. So, I guess the blood labs have come back, , , , Because the head ED Doctor comes in and tells everybody to Get Out and to gown and mask before they come back in, Full Contact Precautions, I was "Neutropenic". I had no White Count!! So, the Vascular Access Team (IV) got my IV going and I went to my room hooked up to a big bag of Vancomycin.

So, Wednesday (9/27) the Hematologist comes to see me and we have the usual small talk, , , then down-to-business. I know my White Count was/is low, but when can I go home? Well Dingpatch your count was not "low", you did not have anything to count; your "count" was officially 0.0! I/we cannot/will not discharge you until it gets back over the XXX threshold. You have no immune system right now, the Chemo has killed it. If you had not done that walk-in and had, let's say, got a cut or a cough, you could be here later in the ICU fighting for your life!!! All the IV antibiotics were not because I had an infection but rather to keep me from getting an infection.

I'm "OK" now and got home yesterday afternoon (9/30). I'll fill in a bunch of blanks later.

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Dora Hates You

Edited: 09/17/2022 at 06:26 AM by dingpatch

UPDATE:

> Lost 15 pounds from 9/21 to 9/30. Have gained 5 back.

> was on two (2) bags of antibiotics: one was every 6 hours, the vancomycin was once or twice a day. The vancomycin "burned out" the one vein in my right forearm, still sore. They put a new IV in my left forearm for the last day.

> my next CHOP chemo session will include "stuff" to help prevent white cell loss.

> my hair started leaving me Wednesday morning (9/27), shaved my head when I got home.

> waiting on a new chemo schedule, , , , my "authorization" expired at midnight 9/30 when fiscal year 2017 ended.

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Dora Hates You

Ding...glad you caught their attention!!!

and if you need hair...i have plenty!!!

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BurrysBreak

Inflation caused The BIG BANG...look it up!

U got this buddy. Think positive!

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Style is what you make it!

Thank you for sharing this painful shit. You will beat this, brother...

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Who needs a better life?

Constipation saved your life. That's a new one! I bet five of that fifteen pounds dropped out when the blockage freed up.

I sounds like a rough ride, but keep at it. We are all pulling for you.





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I was right.

UPDATE:

New chemo schedule starts next Thursday (10/26).

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Dora Hates You

11/04/2017 UPDATE

So, started R-CHOP chemo again this past Thursday/Friday; Thursday was the "R", Friday was the poison (CHOP). Uneventful, so far.

But, because of my previous white cell crash, they did put an "On-body Injector" on me for the "next day" injection of Neulasta to protect my whites. Neat little device about 1 1/2 inches square and about 5/8 thick. They un-box it, fill it with Nuelasta, stick it on the fleshy back side of my upper right arm, set it, and wait for it to "count down". After about 10 minutes it beeps, you hear a "click" and a very small nylon needle pokes into you. From there, there is a 27+ hour count-down until the injection. It beeps and starts a 40 minute +- injection process. When it's done, its light flashed red and you peel it off. Done.

Saw my Health First Oncologist before last weeks chemo. He is keeping all of his boxes checked for the VA. Current plan is to have one more course of chemo, wait a couple weeks, and then have a P.E.T. scan at the Lake Nona VA. IF, the oncologists "like" what they see; 3 more chemo sessions and I will "hopefully" be done! BUT, if they Do Not Like what they see, , , , , well it looks like it will end up being The Full Monty for me. But, for now, my Health First guy says that he fully expects me to be OK with just the standard R-CHOP chemo; his Lymphoma Expert buddy in Europe feels that 5 years is a rather long time for a "relapse" to occur. Keeping fingers crossed, hope for the best.

I went to Lake Nona yesterday to begin the initial stages for a "Bone Marrow Transplant". Lots, and lots, of talking and splaining, 16 vials of blood, complete "blood typing", EKG, chest x-rays. All of the other medical disciplines will get to see me, check me out, stick wires up I-don't-know-where, , , , etc. Even Dentistry! If the dentist does not like something in my mouth, I get full, complimentary, dental work. All will take a couple months before I would actually start any transplanting.

The Bone Marrow Transplant process is way more than I initially thought. The VA only does it in Nashville, San Antonio or Seattle. It is "almost certain" that they would fly me to Nashville, where they work with the stem cell folks at Vanderbilt. It takes up to 5 weeks. Mrs. Dingpatch has to be with me as my primary support. They'll put us up in an extended stay hotel. I will not even have a co-pay. Oh, and, I have to pass three (3) street drug tests before they would proceed, no problems there.

I still have a lot of things to "nail down", but here are the high points:

They start with a couple days of a dialysis type procedure where they collect your white cells. (current indications are that my whites are just fine, no need for a donor).

Then, the Big Step, , , , they put you in the hospital and give you the full Cage Match Chemo that basically kills off everything in your blood and bones. Then they start putting your "good" whites back into you. After all this and all that, they re-vaccinate you with all of you childhood immunizations.

That's the short of it and I know that there are many blanks to be filled in.

I'll keep you posted.

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Dora Hates You

Edited: 11/04/2017 at 05:41 PM by dingpatch

Good luck. Pulling for you. Thanks for blogging about it. Must be tough.

Thank god for (no thank our fellow Americans for funding) the VA.

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"The truth is incontrovertible.
malice may attack it,
ignorance may deride it,
but in the end,
there it is." -Sir Winston Churchill

Hoping for a full recovery and remission dingpatch.

We're praying for you!

Thoughts and Prayers




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Puerto Rico 11 - 24 - 2013

Thank you, to all of you.



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Dora Hates You

Hang in there Howard, just seeing this now. It's Vic. Hit me up if you want. I'm a dietitian that worked in oncology for quite a few years. Check out Synsepalum dulcificum, aka "Miracle Berry", for your taste issues.

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11/17 UPDATE.

So, started R-CHOP chemo again this past Thursday/Friday; Thursday was the "R", Friday was the poison (CHOP). Uneventful, so far.

Saw my Oncologist Thursday morning before the chemo. Small talk, then he checked me over some. Everything seems to be OK. Then, he says that this will be my last chemo for awhile until I have another P.E.T. scan (currently scheduled for 12/6). IF he likes what he sees in the P.E.T. scan, he'll continue me on three (3) more rounds of R-CHOP and I should be "Good To Go"!!

BUT, if he, and the VA, do not like what they see, then WE HAVE TO TALK (about the bone marrow transplant thingy)! He was surprised to learn that I had already started the bone marrow "consult" protocol at the VA. When I saw him last he had had his nurse contact the VA about it. The VA had called me with an appointment schedule while I was driving home after the 10/26 chemo!

Drove to Lake Nona last Wednesday (11/15) for an Electrocardiogram and more blood work.

I go to the Viera VA this Friday (11/24) to start a Pulmonary workup.

Go to Lake Nona on 11/29 for dental, and them back on 11/30 to start with Social Services in regard to my "Support System", etc. and the potential trip to Nashville with my "Support Person" (wife, family, friend, whoever it may be, etc.).

Back to Lake Nona on 12/13 for a two hour "Mental Health" workup.

More to come.

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Dora Hates You

Edited: 11/20/2017 at 02:59 PM by dingpatch

A bit of self encouragement, , , ,

Had to take Mrs. Dingpatch to the Viera Hospital ER late yesterday afternoon per VA instructions (it was "after hours" for the Viera VA clinic).

While there her attending nurse (RN) ask me about my chemo status. I told her about the possible trip to Nashville. She said that her husband is a Vet and had just been through the bone marrow program at the Nashville VA earlier this year.

She said that as having been a RN for over 15 years she knew what to expect and such, but that she had still cautiously wondered about the level of care her husband would receive at the VA. Nope! She said that she was very impressed with the facility and the level of care he received while there. And that the Stem Cell group at Vanderbilt University is second-to-none within the U.S.

Makes me feel not so apprehensive about it all, , , , ,

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Dora Hates You