Day 26 and lifes good

Gradually feeling better and better every day. Can eat some and drink some on my own, so it's all a piece of cake from here...been a long haul and I am close to done I think...Dont know if I would go thru it again though..It was that tough and only to maybe get some maintenance drug free time...not sure it will be worth it yet.. Time will tell I suppose.
Being back home is so much better for my mental state and only go the the clinic twice a week for tests, so in 2 weeks they will relaese me and I am on my own and back to my local oncologist doc for checkups and tests. Pretty boring from here out...
I think this will end my blog experiemce and I want to thatnk all who replied and called me to see how I was doing...reallly makes me feel humble and gratefull..thanks to all and good night.

Day 19 and outta the "apartment"

Feeling pretty well overall. Just need to learn to eat again and drink more fluids.
Nothing tastees good and get full quickly, so need to eat little bits at a time..Sweet stuff makes me Yarf....Get hydrated 4 hrs a day to make sure I "drink" enuf with a portable pump.
Only needing clinic visits 2 or 3 times a week, so we mostly moved back home today...Muuuuch more comfly and moe better.
I suspect in another week, I will be pretty much on my own...(according to me anyway, but who else maters) At least I can talk on the phone some as my chemo brain gets back to semi normal.
Matt has been doing well with the business end, so we may just have survived this whole ordeal.
later

Day 13 or so- still in hosp

Wed the something or other...lose track of everything here.
All the blood counts are rising nicely and it may be that i get outta here on Fri...
Weak, but able to eat Jello today.
No email or phone calls yet.
looks like i just need one count to get up a ways and I meet all their criterea.
Am soo glad my son Matt is taking over in my abcense..what a godsend..He is handling it all with only a phone question or 2 per day. Will still have a business when this is all over.....
aatransaxle & son maybe..
tired.bye

Day10..there my be hope...

Been in the Hospital since Wed..No reson to try to do anything till now.
Being IV fed and hydrated and feel like total crapola. No energy and cant do anything but sleep.
Numbers still Zero, but feel a hint of better things to come. They say Day 12 or 14 will be the turning point, then I can get outta here. All for now..thanks for ckin'

Day 4 blaahhs

Tired tired tired..Cant eat..drugs let me sleep some..this sucks and we aint hit bottom yet till day 8 or 10...Can take a 2 block walk and feel better. Nothing tastes good and drinking only cold water tastes good.. Then what little goes down, comes right out the backside..
Maybe they can stop that tomorrow..got a kidney ultrasound tomorow for some reason..their wish is my command...Gonna take mor pills says she who must be obeyed, so later.

This is a picture that Daryl took last Monday (the 19th of April). He asked that I put it into his blog for him. Today (Saturday, the 24th), he old me that he was tired w/no energy but doing OK.

CC

Day +2 Feelin mostlyOK

Too tired to post yesterday...Just plain tired with no energy and could only lay there till beddy by time when the sleepy pills took over.
My numbers are dropping as they are supposed to gradually down to nothing.
Will gadually get worse till the cells re-engraft later next week.
So for now its try to eat...seems to be a problem...Dont want to eat or drink anything presently.
They gave me a hydration pump yesterday to feed me fluids here in the evenings, as I dont seem to drink as much fluids as they want. Gotta keep the kidneys flushed out.
So basically..I be tired and just wanna lay there doing nothing...Not being one to just lay around, This kinda sucks overall...It will get better eventually, so on we go......

Day Zero..Transplant Day

Finally we are on the home stretch..A long strectch, but heading toward the end nevertheless.
Yesterday was supposed to be a day of rest..instead the night and day was spent fighting nausea and not wanting to eat or drink..4 kinds of anti nausea meds and I stilll puked in Wed morning and this norning..Feel wimpy and cold and tired, but functional.
Still in outpatient mode at out apartment, so all is according to the master plan..(going to the hospital is not what we want)
Today we went to the infusion room at 8:30 and got some hydration and about 18 million cell back into me..Wierd..They freeze the cells in a DMSO solution to -30 ..Warm then up and feed them back IV..Now the Wif says I smell like a big old Fir tree I am told..DMSO is a derivitive of wood pulp . Just glad I dont have a sense of smell. 4 hrs of ydration, a ct scan and 3 naps...But feel 1/2 human currently and even ate some peaches and cottage cheese...They say it will geet worse after few days, but we will see. I typically fail fast and recover soon it seems...Got home at 6PM...long day. So now just have to let the little stemmy celc do there thing and get the bone marrow back to working..dont know what numbers they want yet, but looking fwd to it for sure.
Thanks for caring group..

Day -2...Melpahaln day

Today is the infusion of "weed killer" to nuke the bone marrow into extinction.
Easy so far..Sit here and catch up on email and chew ice chips for 3 hrs so my mouth wont get sore hopefully...I think I never want to see another hunk of ice ever again and I still have several hrs to go yet...The melph is nasty stuff in many ways and trust me..you dont want to know all the details of what it will do to me..
Should feel OK for 1 or 2 days they say and then its downhill from there for a bit.
Moved into our new tiny apartment for the next month..800 sq feet after being used to 2800...
so afr so good..the wif & I are still on speaking terms...see ya

- 12 days and counting

The 20th of April is transplant day for sure...well at least unless I get sick in the meantime or something...Running a 99 to 100 temp, so gotta watch myself, stay hydrated and secluded for the most part.
They will nuke me with a chemo called Malphalan which I am calling weed killer since it sounds like something Ortho would sell (thanks for that Karen)...That stuff will kill off the bone marrow.
1 rest day after and on the 22nd they will reintroduce a portion of my stem cells. That is day 0, or as some call it their new birthday..Kills all my childhood and lifelong immunities as well.
Till then I am gaining strength gradually, and feeling a bit better each day.
Also, as with most people..I started to lose my hair. I now know what they mean when they say your hair hurts. After 34 years I had to shave my beard..Hurt to touch it..Man do I look funny..Rennie (my wife) just stares and shakes her head..We have been married 32 yrs..do the math.
Next will be the to cut my hair soon I think, when it starts falling out massively..Weird stuff for sure. Just glad I am a guy since it doesnt matter so much ...Worth it in the long run though.
Thats all for now. Next report around the 20th or so I suspect.

Stem Cell Harvest Day-April 2nd

Yee Haw world...Finally after 10 days of shots to mobilize the cells, the magic numbers came up on the slot machine and I spent 4 hrs hooked up the the Apheresis machine (fancy cool centrifuge) and they rotated the blood thru and separated those particular cells from the rest of them...Doc's want 10 million so there are enough for 2 transplants..I told him I wanted 15 mil, so there were enough for 3...He laughed at my theory and said we will see...
Been without immune system for a week till the white cells came back to normal...Good bone marrow works wonders at recuperating ya..
Got 36 million cells...More than enough for whatever comes down the road, as long as they do what I told them anyway...3 have been done before, so whats the big deal if there are plenty...
Amazing how stuck some people get in their"this is the only way" world...I have enough ocd I guess, to want to plan waay too far ahead...just in case...Amy way, I seem to be a patient that questions a bit more than they are used to...tuff cookies world...Its my body and ultimate choices for how I proceed..I gotts to plan 10 to 15yrs out instead of laying down and accepting the usual .
There are human embryo transplants being done in other parts of the world, and despite the religious aspects to that particular process..It happens and many times saves lives and quality of life..(thanks Denise)..ok, off the soapbox..
Waiting for the 20th or so for the next step of the transplant itself, so will shut up for a bit and enjoy a non drug few weeks...now to catch up on teh messages I have been too drugged out to read..thanks world...

Dex and Atrial Fibrilation...3/26

Another stellar day in the real world..Or so the tell me...As previously bloggedated, I did the Cytoxin chemo on Monday with 4 days of 40mg of Dexamethasone steroids following..Well as had happened once before as I came off the Dex,,My heart went into an Atrial Fib rhythm that makes the hearts 2 parts out of sync..Makes for a wierd feeling. Last time they zapped me 3 times to get it back to normal..This time we called and did their call first adn see what to do..Of course they said to call 911.....Uh Uh...not going to theUof W in an ambulance..Sorry, not my style...Drove (well, the wiffers did) with no problems..Onlyu took 2 tries to get me "normal" this time. S no mroe Dex for me..ever...They gots other stuff I can take...
Now maybe I can sleep tonight witht the Ambien they gave me..No real Rem sleep in 4 days...
Almost got there Wed after a "Brownie" graciously given me to try...Hmmmmm ..Flashbacks to the 60's.
So on to the daily blood tests and Growth factor shots till the cells are mobilized and they do the harvest likely on Fri or the weekend...That parts easy ...thank goodness...
sees ya.

March 24th..Pre Harvest Chemo

Monday they were so kind as to give me a quart of Cytoxin chemo poison to nuke me in preparation for the stem cell harvest next week. Put me down and out for 36+ hrs...
You probably don't want to know all the good stuff that can come out of you when they give you the really good chemo and for how long....trust me..not a fun 2 days. Need to do it to get the Myeloma numbers down to zero as much as possible or so hey tell me...
Numbers are good and as expected and now Wed I am feeling pretty good and even finished a tranny this afternoon.
Taking 4 times the Dex steroids and getting growth factor shots for 4 days to get the cells out of the marrow. Should be a week till harvest time and that will be an easy 2 to 4 days.
Feeling better and doin as well as can be expected overall...
On to next weeks excitement...

Hickman Catheter installed Mar 18th

Thursday was another interesting day. Had to go the the U of Wash by 7am ( yuk) to get the central line put in and my port taken out. Not even any coffee beforehand....Do these people realize what they put us through??
The port was used for chemo so my veins wouldn't get trashed with the chemo. It was put in my left chest right after diagnosis and worked well.
They need a large bore central line tied into my veins to take and give blood and for the stem cell harvest. It was put in my right side chest and the port taken out during the same operation. Conscious sedation is what it is called and I certainly was conscious this time. The last 2 times, I didn't remember a thing, but they evidently didn't give me such a large dose this time..remember chatting with the nurse and feeling some "work: being done...kinda cool.
Tired and sore today (Fri), but feel better this afternoon.
Went to get taught how to flush the Hickman and change the dressing this afternoon.
Fortunately the RN I live with knows how to do this stuff and I don't have to worry about it.
Flush it daily and change dressing weekly. Still can shower with it and they gave me a little necklace to secure/hang it with to keep from accidentally pulling it out. Hmmm..Maybe I can fill a syringe with coffee and mainline it along with some 90 wt gear oil so I don't go into with drawls.
That's all till Monday's chemo for 8 hrs to start the cell mobilization.

March 17th...Data Review Day

Meet with the Big Guns Day, in other words, to find out the harvest protocol and go over the tests of the last few long weeks.
Get my central line, or Hickman Catheter, installed in the morning bright and 7 AM early.( i am NOT a morning person as some of you know...)
That will allow them to freely take and give my blood during the harvest, take/give blood samples and drugs painlessly and also to give me the Cytoxin chemo on Monday to start the mobilization of the stem cells. The Cytoxin will get the stem cells from the marrow and into the blood. 7 to 10 days later, they will use the Apheresis machine (centrifuge) to separate the cells and freeze and store them till I have recovered enough for the actual transplant on about the 19th of April.
Most of my blood work came back normal but the Myeloma cells are still there and rising a bit. Hence the chemo..to kill as many as possible before the reintroduction. 2 weeks off for my poor body to rest up and then the rest of the fun really begins.
All for now..gotta go drink my last Gatorade till tomorrow afternoon...

March 16th
Wow....Loren Busch posted the blog link to the various vanagon lists..Got teary eyed reading all the well wishes..thanks group...Your making me feel ever so humble...

Got some news..Wed the 17th is meeting day. We meet with the Doc and team to go over all the test results of the last 2 weeks and find out which harvest protocol they will use and Thursday I get my central line put in (Hickman Catheter) that allows them to take my blood out, into the apheresis machine (stem cell separator/centrifuge widget) It may take 1 to 4 days (4 hrs/day) to get the number of cells they need.
Once the line is in, they will either give me Nupagen shots or 4 days of chemo to mobilize the cells into the bloodstream. Then after a few days they harvest the cells and I really get nuked & the real fun starts. nuff for now and will see how the rest of the week goes.

March 13th

To continue...
The process of an SCT (stem cell transplant) is complicated and seems to be pretty time consuming with the medical beaurocracy..
We started the testing phase on March 4th..Was in line supposedly since mid Feb, but turns out they had no record of me till I called and asked..bugged my onc doc and pushed some buttons.

The basics of the SCT is as follows... testing, mobilization of the stem cells with either a Nupregen shot and wait a week for it to get the cells out of my marrow and into the bloodstream...
OR 4 days of chemo and then wait 2 to 4 weeks for all the blood numbers to get back to shape and THEN harvest my cells thru a catheter that takes it out of me and into a centrifuge to separate cells and feed the blood minus stem cells back into me.
They want at least 5 million cells per transplant. Hoping for 15 million or so and that may take 2 to 4 days to extract that many. All depends on what went on before..Type of chemo and overall condition of me as a whole I guess. One guy got 67 million in one day and some get only 1 mill or less after 4 days. Some of this is still a bit confusing to me and I hope I am getting it right.
Then after harvest, the cells are frozen...
I am then nuked with Melphalan, which is a baaad nasty chemo that will kill my bone marrow and theoretically all the bad Myeloma cells.
Wait a day for the chemo to dissipate, then re infuse a portion of my saved cells back into me. The rest will be saved for the next transplant down the road..And yes, there will likely be at least one more. It seems from the reading I have done, the "average" length of remission is 2 years or so...Since MM is a genetic disease, my body will still produce the faulty Myeloma cells that don't die off when they are supposed to and will increase in numbers again.
Next after putting the stem cells back is to wait for them to start working again. With no immune system to heal..It takes a week for the cells to start the bone marrow working again. During the next 3 months..I will gradually get back to "normal" as my system gains strength . New white cells will start working and try to ward off any infections.
We will have to be living in Seattle for about 30 days pot transplant (called day Zero).
They want us to be within 20 minutes of the U of W if something happens. Any temperature over 100 means I have an infection and into the hospital I go asap for IV antibiotics.
Testing and plasma when needed every day (sometimes twice a day in the beginning) for a few weeks at the SCCA to monitor the progress. As I gradually get more strength and the numbers get closer to the low normal range, they will let me go home and the daily trips to the clinic will get less frequent and soon, I can get then done at my local Cascade Cancer Center clinic much closer to home. Still will have to go back to the SCCA for specific tests for a while, so it will be a while till there will be anything close to a normal life for us.

Will take a maintenance drug (chemo) such as Revlemid ($8000/month) to keep them from coming back while in "remission". Each drug only works so long and along the way Rev will quit and the next drug or combination will be tried. As long as the numbers stay low, I am good..They will gradually all stop working and by that time we all hope the trials and testing will come up with the new next best one that will knock it down for a while longer. Or better yet, The genetic researchers will figure a way to put back the partially missing chromosome 13 into my DNA. Strange science Mr Wizard...No known cause or permanent cure...Yet..

Now back to the present...

Been tested every day since the 4th..MRI, double hip bone marrow biopsy (not fun), Dental health, several large blood draws, Urine tests, Pulmonary function, Xrays, poking and prodding in general, classes to teach how to take care of me afterwards, food prep for a nutrophenic person (no immune system), house prep..no plants, clean everything, no well water, pet precautions..etc...can't remember all of them as its a blur...
Pretty comprehensive to say the least. Suddenly they give me 6 days off to hurry up and wait some more. And here I am...Feeling pretty good overall..tired and the neuropathy hurts my legs, but all that is probably my new reality from here on.
nuff for now..gonna get some household stuff done while I can..even built a Rabbit tranny yesterday..yee haw...

Daryl's Multiple Myeloma Blog

Here goes my venture into the blogosphere to let those who wish, view my fight with MM (Multiple Myeloma), an incurable genetically caused disease of the White blood cells and bone marrow.

Some of this might be a bit wordy, but for most of you, the whole process is new and may give you some insight to my new world and that of some others "blessed" with my new reality.

Currently it is March 10th of 2010, just so ya know...Been asked to let my peeps know whassup, so here we go. I can't promise to make daily or even weekly updates, but will post when something of note happens.( or when I am bored out of my wits)


This all started in late August of 2009 with my left hip suddenly starting to hurt more than just the aches and pains of 58 yr. old age...I skied a pile of vertical last year (Just under 300 thousand) and figured I was in pretty darn good shape overall with no health issues.


Down at Mogfest in Oregon, I was starting to hobble around with the fairly sudden onset of left hip pain and feeling quite tired to boot. Knew something was afoot that I wouldn't like.


Made an appt with a known good ortho doc to have a look see. His name is Dr. Stanley Kopp, and he is a truly great diagnostician to pick up this from an MRI picture. He checked me out and decided I needed an MRI and X Rays as something didn't quite make sense to him.


He took a look at the MRI and called me to suggest I do some research on MM and make an appt with my G.P. Doc. for further tests. He spotted a 12mm lesion(hole)in my left hip with more smaller holes in the femur,ribs, skull. He gave me a list of what to have checked and off I went to find out how much trouble I was in.

Took the list to my long time GP doc, Dr Barry Marmorstien, and hit him with it all at once..OK Doc..Got pictures..need at least these tests..got a full body scan scheduled and an appt with an oncologist I trusted after he got my youngest son back from the brink with Testicular cancer 4 yrs ago...About all he could say was you got it well covered..Good Luck


Bottom line was ..A week later I was starting chemo at Cascade Cancer Center at Evergreen Hosp in Kirkland WA. with Dr Matt Lonergan.

Cancer hits everyone differently ..My brain was totally screwed up for about 3 weeks till it all started to become my "new reality". Dont think my poor wife has fully recovered yet, but she is a trooper and as an RN, knew much of what I would be going thru.
I thought that working would be mostly out of the question till my middle son, Matt, said he wanted to keep the business going while I was going thru this. So I started to teach him to rebuild Vanagon transmissions while I did the rest of them. Best thing I had done in a long time..After a few weeks, I could deal with parts, shipping, chemo and talk on the phone and trannies still got done...Amazing how much of a load off my mind and it felt like semi-retirement..Really cool after 6 or 7 day, 70 hour weeks for a few years in Spring and Summer..

Dr Lonergan put me on Velcade and Dex for the treatment. 2 weeks on, Mon & Thurs, and 1 week off for the body to rest with no break for the Dex. Each 3 weeks is a "round" of chemo and 6 rounds (18 weeks) is the norm. Fortunately I am generally in pretty good shape and the chemo, Velcade (actual name is bortizimib) didn't bother me much..Tired overall, but not debilitating and no nausea or hair loss. Now the Dex.... (dexamethasone) is a different story...It is a corticosteroid (sorry, no muscle building here) and makes some people literally crazy with a wild variety of symptoms..I was hyper and wired for most of 3 days after my Thursday 40mg of pills..Not able to sleep the 1st night much, if any, and gradually better the following days. Crashed hard on Sundays, then back to "normal" for a few days. Gotta admit I got a heck of a lotta work done Thurs and Fri every week.
The basic chemo and all went pretty smoothly overall. Lots of trips to the infusion room to get "poisoned" by the sweetest and most compassionate nurses around I think.
Home to relax and recover a bit till the next go round.
Blood work was taken frequently to look for a pile of different things from white blood and platelet counts to the "M" protein (the Myeloma protein marker) to see how I was progressing.
Counts were gradually lowering and the Velcade was doing its thing quite well to kill the Myeloma cells and the Dex was keeping the remaining bad cells from eating into my already fragile bones.
Fragile bones in the body core is the main symptom from what I gather. Many MM patients have collapsed vertebrae after a while and are diagnosed from those type of injuries.
I personally had hip and back pain deep in the bones. Woke up one morning with a cracked rib...Guess I couldn't ski this year huh..trees and I dont always get along.
Bone pain generally went away gradually with the treatment..Still some different spots of pain here and there, but not very bad.

Now..after the basic chemo had been completed and my M spike went from a 3.7 down to a .3, then I was suddenly the property of the Seattle Cancer Care Alliance or SCCA. SCCA is a part of The Fred Hutchinson Cancer Research Center along with the University of Washington. One of the top cancer groups in the country and I am fortunate enough to be so close to them for treatment.
Treatment of MM is kind of a misnomer..No way to get the genes back to their previous state and let the white cells die off after they do their immune system thing, so all we can do it put it into remission for a while and then go on to the next best newest greatest treatment.
Thalidymide, Revlemid and Velcade are the main drugs used currently. Lots of other drugs I know nothing about are combined and used when the first don't work any longer.
Chemo is like bullets..Once you use one..Its gone... and you try the next one and hope it works. There are always many trials going on with different combinations and doses to see what works best.
The next best thing for many of us who are able to get our M spike and basic counts where they should be is a Stem Cell Transplant or SCT. And that is where I am presently.
Going thru a battery of tests to see what protocalls will work for me to harvest my own stem cells. I am having my own cells harvested and reinfused which is called an Autologous transplant. If I got them from my brother, for example, it would be an Allogenaic transplant.
Gotta post this to start with and will continue another time to get all the basics written down.