Strange, scary days:
When they ran blood work before the kyphoplasty and the Doc at OSU saw it he was very happy - I was back in remission! Didn't even finish the first round of pomalyst (had to stop before the surgery)!
Doc wanted me to continue for a while, really slap the cancer around real good so the idea was a few more rounds then maintenance dose.
Then one Friday after work I went through drivethru at Taco Bell to pick up our dinner - and I was unable to say the name of the drinks I was supposed to order. I could read it's name on my list and on the board. I knew what it said and what I wanted. But when I tried to say it it was like a blank sheet of paper. I ended up ordering the correct drinks when I went inside - not sure but I THINK I pointed at a picture. But then got the wrong drinks at the drink fountain. I think THAT was just me being me.
I was fine otherwise, told family and we were all "that's weird" but like I said I was fine then.
Saturday at work, did my normal morning things, went out and collected a couple water samples - everything was fine. Until I tried to work the TOC machine. I knew what to do - or rather I FELT like I should - but had no idea. I just stared at it. A LONG time. I did manage to get it into another step, but it was the wrong step AND set wrong. I've worked this thing for years, could show anyone how to run it in minutes.
Then I had to issue a boil water order. I opened the document on my computer, started to change the date, typed a "J" and that was ALL I managed to do. AND it was the wrong document.
Another machine - the GC - I did set it up correctly. Mostly correctly, because the results were useless. I didn't even realize it. Did the second run - exact same useless results.
I remember eating a left over taco for lunch - then, next thing I knew clearly was it was only about an hour to end of shift and I had done nothing. During the afternoon I did start to run my samples, so I tried to finish them. I wrote the date (correctly?) one place on the form but couldn't do it on the other place. Same date.
At some point I remembered my procedures book, so I got it out and read what to do. I could read them. I understood them. But they didn't relate to anything I needed to do. (yes they did - and I am the one who wrote them!)
I realized I needed help and tried to call my wife. WHY I didn't ask the operator who was in the NEXT ROOM I have no idea.
I started to panic and called my wife. Took me forever, eventually managed to work cell phone. I called my boss - the automated "If you'd like to make a call" recording - I swear it started to sound angry with me since I messed up so much.
During this time I took 9 pictures of my knees - no idea why.
Eventually at home I couldn't say "salt & pepper". When I tried to work TV remote I got mad because comcast had changed the way everything worked and it confused me. (They hadn't changed anything). Trying to watch Star Trek - I ordered HBO and some concert.
So its off to the ER where I had trouble following commands like touch my nose and to clap a certain way. Simple stuff. Asked where I was - again I FELT like I knew, but couldn't figure it out. I think I said "here" or something. I had trouble with nouns - used pronouns like "that" or "those" a lot. Asked the month - only one I remembered was March.
Doc points at his ring asks "what is this?" I said "ring". "No - what is this?" I thought he wanted "wedding ring" so again said "ring". Except I was really saying "pen". I had no idea.
I was up to 4AM trying to turn off the TV in the room. I could see the "TV On/Off" button, knew what it said and meant - but could NOT think to push it. I was SO happy when I eventually tried it.
Sunday I was still confused, improved during the day then went back down later. Had lots of tests, CAT scan, MRI of my head, MRA, checked my carotids, looked at my heart, loads of blood samples. Everything was fine! Heparin to thin my blood seemed to do the trick.
So it seems it was either 'dex withdrawal' or a very rare reaction to the pomalyst. I hope I can still take it safely since it was working so well. Going to send bloodwork to OSU soon to see what is going on right now.
And NONE of that was the scariest part to ME. That was when I found out from co-worker than on Friday (day before the big confusion) I was making silly math mistakes, entering data on wrong line on computer when any child could see where it goes. And I had no idea at all.
This just adds even more doubled copays with our new insurance plan. Copays DOUBLED. And a higher deductible.
I've just gotten out of the hospital, and it appears that the myeloma has caused a compression fracture of the L10. One that hurts an AWFUL lot. I've got an expensive back brace (which actually goes in the front) and it helps a good bit, keeps me from moving too much in the wrong ways.
We are getting kyphoplasty scheduled, and that will just get more expensive in July when the new, twice-as-expensive insurance kicks in. And there have been many prescriptions (with more to come). More doctors visits, then we have to go back out to OSU....
Me in my backbrace 6-19-2014
My remission is over. Over the last 2 months my creatinine has climbed to 2.58, my free kappa light chains climbed from 49 to 261 and my IgA went from 297 to 1096. Blood counts are dropping as well, but not bad yet.
My back has been aching for over two weeks. They have given me Endocet. Takes care of the pain but makes me sweaty, dizzy and nauseated. Fun times.
I get to go back to OSU next week for bone marrow biopsy (yay), then I will probably be put on Pomalyst and Dex. More fun.
My wife is all upset again, worrying about everything. I tell her it will all be OK, that I am confident, but she still worries about me so much. I love her so much.
I am just over 100 days post-transplant, and so far I seem to be doing OK, except for a lot of trouble sleeping - and that messes with my head a lot. At least nothing seems to hurt anymore and I can do things without stopping to try and breath. I do still get tired easily though.
My wife's friend Lisa is holding a steak fry to benefit us - thanks Lisa! :) You are making my creditors smile.
Our area is holding a neighborhood yard sale this weekend, so maybe this will be a good chance to sell my old Star Trek stuff and a bunch of our DVDs.
On the plus side, I got in a good bit of swimming this year - the Drs wanted me to exercise - low impact, so swimming and walking sounded good. Helped teach my daughter how to swim - or as I call it, 'not drowning lessons'. She's doing real good now.
Pam just did some checking.
It wasn't $200/day for them. It was $300. Per SHOT, not per day.
So we owe $18,000 for the COPAYS on the neupogen shots.
Don't have it, can't pay it. So I guess we're screwed.
And I might need MORE. Or switch to mozibil - no idea what that one is gonna cost.
This must be what my horoscope meant when it said "Ka-Boom!"
We are up to about $4,000 in neupogen co-pays. At least I am close to getting my stem cells harvested - my white cell count was up to 2.1 yesterday - has to reach 3.0 to be harvested.
And that will mean at least a day or two in a hotel (harvesting is out-patient), and maybe as much a 5 days. Joy.
Maybe Columbus has a nice, free hotel?
The high-dose cytoxan started killing my hair, so I had it buzz-cut. But it finally started to look too scraggly, so now I have joined "The Shaven".
My white blood cell count is starting to rise at last, so I can look forward to the stem cell harvest soon. Good news in many ways - those neupogen shots hurt and cost a bundle.
I showed up - early - at the hospital today for my routine blood test, neupogen shots, and a transfusion. (Need blood to be specially treated)
My Sunday bloodwork was too low so the oncall doctor called in transfusion. At least I know someone is checking them on the weekends.
Nobody seems to have a record of the doctor calling in orders yesterday for my blood - even though there was paperwork waiting for me at registration. Since there isn't any blood prepped for me, they have to get it rush delivered from someplace else. Platelets they have, I guess I'll get them tomorrow.
Been here 5 hours and only had the routine stuff so far.
We just recently found out that the cheapest way for me to get the neupogen shots that I need (they help me survive after the high-dose chemo) will be to get them at the hospital - and will cost us $600.00. We are hopeful that ACS will help out with that.
And I have just spent the last 4 days sick as hell - just a nasty stomach bug, but probably made worse by my current state. At least so far today all is normal once again - 'normal' being a relative term.
On March 21st I go to OSU for the high-dose cytoxan stem cell mobilization. This is to get the stem cells to come out of the bones, and into the blood stream in high numbers so they can be collected - usually in a couple weeks. Then they can be used for the transplant back into me.
I'll be off work for perhaps up to 3 months after the mobilization/stem cell transplant, though I am hoping for it to be a lot less.
It all sounds like so much fun.
Next Monday and Tuesday I get to go back to OSU for the evaluation testing.
We saw Dr Bensen at OSU today. He says that the treatment I've been getting is what he would have tried, but it's obviously not going to work well enough.
He wants to go ahead and do the stem cell transplant. They prefer to have my numbers much better, but that they CAN do it this way.
So, if all goes well, in about 4 weeks I'll be getting high dose cytoxan. And there is another drug I'll get that will kill my bone marrow (to try and finish off the myeloma). That would be lethal so at that point I HAVE to get the stem cells.
There are tests they have to do first, and imjections to get. Some of it I can get locally, others It's back to OSU again.
We are at the hotel, waiting to head to the cancer center - hoping for good news. Better than yesterday's anyway.
I went for my usual Dr visit, and my blood work is STILL falling. :( Low enough they wanted to send me in for a transfusion. At 3PM. I told em "I can't, we are leaving for OSU within the hour."
She was "OK, I recommend it, you refused. Probably good idea because they will take blood tomorrow, no sense getting a sample that is much better because of someone else's blood."
Thanks to the donations we can pay my Doctor for all of the copays that we owe him. Thanks.
As of today I received two bills. One for $250.00 for visit co-pays, and $630.00 for leukine shots for my WBC. And my Dr just added 4 new prescriptions that will cost me over $50.00 a month on top of everything else.
Every bit helps and is much appreciated.
This is my 1 year anniversary - making me a 1 year survivor. I'm still in the fight, not gonna give up until the cancer loses.
I was diagnosed with Multiple Myeloma in February of 2012. An aggressive form. I've been on chemo ever since, hoping to reduce it enough to be able to get the stem cell treatment that would probably help the most.
After all this time we just found out in February of 2013 that the percentage of myeloma cells in my marrow has only dropped from in the 70s to into the 50s - at that rate it will be YEARS before I could get enough improvement.
And I won't be able to continue as is because a therapeutic dose of cytoxan is trying to kill me, driving my hemoglobin and white blood cells dangerously low.
I am currently on revlimid and dexamethasone (a steroid) and if the revlimid fails, there are other, newer drugs to try, but I don't know if my insurance (that I am lucky to still have) will pay for any of that. It has already cost about $500,000.00, and I can only imagine that they will not be happy to continue much longer.
I only have so much sick leave available, so we have been using vacation time to get treatments and cover hospital stays.
I have two daughters at home - one is graduating high school this year, and I'd love to see her graduate college, get married, maybe see a grandchild someday...
My other daughter is only 10 years old, and writes all the time that "I only want my Daddy to get better." I have NO IDEA what parts of her life I'm going to get to see. I'd love to see them all.
And my wife - it's not fair to her having to endure all this, helping me, taking care of me, sometimes having to almost carry me up and down steps. We are supposed to be having some fun in our later years now, and all I can offer her is worry and fear
It would be nice to be able to pay our bills, or maybe just have some cash on hand in case of emergencies.