It's good to be home!

Tis good to be home, it really is...
It took me a day or two to get used to my sanitized house and to find things...but I ain't complainin'!
Thank yous to all that toiled over, around, in and through my house so that I could come home, and "thank you(s)" just doesn't, and isn't adequate.
Then it took another few days to go shopping and acquire and stock up on suggested and needed things.
And then it took a day or two to go to T-Mobile and get one of those "stickem in your USB port" gizmos so that I could have, and now have internet access at home.

Twas good to go to a couple, well maybe three of my commitments this week, pkus my office Sales meeting. Made it to the First Church of the Second Chance, my AA Home Group and Church this morning.
That's a good start to, as my friend Vicky sez, "Getting back into the mainstream of life."

My, "official" return will be Nov. 25...three months out from my transplant which was August 25th. Nov. 25th is somewhere around Thanksgiving, isn't it?
I think that's fitting, huh.
Until then I still need to be ultra careful which is why I need to where a mask until then whenst I'm around

...OK, so now it's Monday and I've gotten to the office for a bit and now am back home with Gregg figuring out some paperwork and insurance and then go to my Oncologist up here and query why his immediate treatment/chemo plan is different than my Denver Oncologist...

I might get back to this yet today!

24 hours and counting...

You know it seems like forever since my diagnosis last March, but now that a large part {I can't say portion because I now begin a 3 year chemo/maintenance program} of the initial treatment is over and I look back it seems as if he time went by soooooo quickly.
Tomorrow at this time I hope to be tossing my last bag of "stuff" in Doug's vehicle and headed home!
I can't wait!
I unofficially tallied up my days I've slept in my own bed since June and I come up with a total of 3!!!
It is going to be soooooo good to sleep in my own bed again in my house which I may or may not recognize...there has been a plethora of people to whomst I cannot 'splain my grattitude to who have gone in and decluttered, sanitized, re-arranged, landscaped and brought it up to the point where I can be released to go home.

Dang all yous guys, yous just opened up the floodgate of tears again.
Simple "thank yous" just don't cut it...I wish I knew what did.

I go in this afternoon to see my Oncologist down here for "formal discharge" which should be forthcoming unless my labs,a.k.a. blood letting, which have been good all week get whacky. When I went in yesterday to have them done there was one pesky kidny function that nwas trending upward (not good) but the nurse who took my "labs" said it diddn't look "all that bad" so I'm just going to keep myself well hydrated today which seems to help and I should have to problem "passing the test".
I see him at 4:30, which means as those who have accompanied me can attest more like 5:30 - 6:00 ish which is too late for me to check out of Brent's Place...the marvelous place that I've been for the past two weeks, a.k.a. transitional housing.
It is going to be soooooooo goot to be home tomorrow.
I still have to be really careful for another month or so.

It seems that three months out from transplanct seems to be some sort of benchmark...That's when I'm supposed to be released from needing the 24/7 babysitting and can "go back to worl" and can do some traveling.
I'm gonna make one more plea to be able to go to Chicago at the end of October to attend a wedding, but the response I got late last week was, "You can talk to Dr. Lee about it, but I dont like your chances."

Before I got released to Brent's Place and once afterward I was given the, "Let's fill you up with fear speech(s) from a couple of the NPs (Nurse Practitioners) which did indeed scare the h*** out of me.
I was told, didn't need to be reminded cuz I didn't know that I have an immune system that is building itself up from almost nothing...so much so that although I'll need my puppy shots all over again I can't have those until maybe 6 months post transplant and a sure way for me to off myself would be to go and get a flu shot! Seems that I can catch something and have it quickly become mega-serious in almost no time flat which is why they want me to take my temperature twice a day and if it's over 101.5 degrees it's "don't pass go and get to the ER asap."
I was under the impression hat the primary reason I needed the 24/7 was that if I cut or bruised myself I could bleed out because of my platelet cound being so low, but as it turns out it's that I can develop and infection marked by fever soooooo quickly that I would need medical attention asap.
So, transplant August 25th, 3 months out November 25th.
You know, that's 'bout Thanksgiving and I have now and will have a lot to be thankful for, huh...

Soooooo, I need your help on something, pleeeeeeeeze.
Would you remind me, gently please, after all I'm sensitive you know, that if you see me trying to do too much, like going to the office every day or being out in public without a mask that I ain't supposed to be doing that.
I am not going to isolate and hole up at home until Thanksgiving, but I need to wear a mask when I'm out in public and that means Church, the office, AA and/or anywhere there might be germs lurking about.
I remember Dr. McFarland, my Fort Collins Oncologist telling me that, "More people die with Myeloma than of it" and thinking that to be some sort of relief, but I've come to understand that what could kill me is the "catching" of something until my immune system is back up and running that could indeed kill me.

And contrary to just a few weeks ago, I 'm not ready to check out.
That few days, although somewhat hazy, that nI really was dead {no pun intended} serious about "checking out" is still fresh in my mind.
There's one person in particular that I need to revisit those days with because a dad has no right to scare the h*** out of his son  by telling him that "I'm ready and I want to die so, 'see ya'".

I'm too excited about going home that I'm not in the mood for picking up on some retro-blogging, but I'll get back to that because there's too much that I need to commit to my journal, of which this will become so that I can look back someday and say, "Wow, I really did live/go through all that."

Later.

Better living through chemistry...

Back in the late 60's {that would be 1960s}, "Better Living Through Chemistry" was the montra of a lot of us ol' hippy and psuedo hippy types.
I/we just cruised along popping 'lil orange, blue, white , black or whatever color of pills or capsules into our gullets and swished them down with some Ripple or Annie Green Springs, called it good and wandered around giggling and doing foolish things for hours.
My/our mental states were altered, sometimes significantly and I/we thought nothing of it.

A lot of my previous post and of the time since March 17 (diagnosis) I have spent with a slug of chemicals being introduced into my system. One of my Nurse Practitioners took it upon herself from the very get go of my admission to the hospital told me and reminded me that I was going to experience a lot of side effects from all the meds and the chemo but she referred mainly to the physical side effects.
It wasn't until being into the mental side effects that anyone told me that I would be experiencing some drug induced whackiness...which came true but I can only attribute drug induced whackiness to a small part of the hell that I went through in my previous post.
There are some, no doubt who will want to lay the majority of the blame on my mental status as being drug induced, and they will be right as far as they go but that hindsight and having experienced what I did leads me to know that all the drugs were, besides their intended pharmaceutical purposes, doing was acting like Miracle Gro to the Dark Side "weeds" that were sprouting and temporarily flourishing with a vengeance.
The chemo that I was taking in Fort Collins was more of a "hold at bay" attempt rather than a Myeloma eradication course.
That didn't start until I got down to the hospital in Denver and was hooked up to the pole that held the chemo drugs and other "things" that needed to be introduced into me via a drip system.
I found a morbid curiousness that for the weeks that I was receiving the heavy duty chemo {the one whose job it was to go in and basically come as close as it could to killing me by wiping out most of my white blood cells, platelets along with as many Myeloma cancer cells it could run down} that the nurses who would come in to change out the chemo bags would enter my room and put on disposable haz-mat suits...and I would think, "Haz-mat suits? And this is the stuff that you are putting in me?"

I had a really good check-up with Dr. Lee Monday and I think that both Bonnie and Doug who accompanied  me got the same read that I did that he was almost surprised at the positiveness of my progress!
The week before when Stacey and I went for a check-up he sort of laid out the picture of what the next few month would look like...2-3 trips to UCH (University of Colorado Hospital) per week, trips to FRCS (Front Range Cancer Specialists in Fort Collins) twice a week or so for chemo, etc. ... but we came away with my only having to come down to UCH every other week for a while and non invasive trips to FRCS for chemo either in the form of pills or shots with lab work that my indicate the need for IV fluids if I don't keep myself hydrated.
My "maintenance" treatment will consist of chemo, via the shots or pills for 3 years.

That's what I know now, and I can live with that...better living, or life if you will, through chemistry.

Some retro-blogging...

I'm gonna do a little retro-blogging here if'n you don't mind...and some of it might be a little squeamish so keep this away from children under 12.
Retro-blogging?
Since the day or so after transplant the days and nights for a couple of weeks seem to run together, some of them are just gone and some of them I am aware of and know...at some level...what was going on but right now I couldn't identify those days on a calendar.
I'm remembering, with some clarity what some of those days were like and I feel blessed to have had a real live person who walked with me through those times to bounce things of of and to remind me of some things that were hazy and lifted the fog surrounding them.
Thanks, Bonnie.
Anywho, since about three day after cancer/Myeloma diagnosis I have confidently espoused that this wasn't gonna kill me.
I don't know how close I came to lying.
This is one of those days/times that I can't pinpoint...but Bonnie could, Sept. 4ish... .
Because of some erratic behavior and "fighting" the system I found myself whisked away from my 11th floor suite and down in the Intensive Care Unit.
Some time around then is when I "lost it".
I lost my will to live.
My son Matt showed up and I think I scared the heck out of him. He came to see how his ol' man was doing and left not knowing. I can remember telling him that all I wanted to do was die. I can remember crying while I was telling him this and looking at the puzzled frightened expression on his face. He left as abruptly as he came and I don't blame him at all...now, just a few weeks later I can sort off take myself out of the action part of the picture and observe it from a totally different, almost 3rd party perspective. I can see myself struggling in the bed, refusing to keep the oxygen mask on, tossing and turning fetal positions right to left and begging God to just end it all.
I can remember getting to ICU and having Bonnie show up and telling her that, "All I want to do is to go home." And being dead serious about it.
And all the while this is happening I am hurting both physically and mentally and hurting soooooo bad that no drug that they gave me, and they were giving me a lot, could diminish either pain.
I can remember having absolutely no hope that I was going to be able to endure any more "treatment" and that my bucket was empty and there was no use in trying to fight the fight any more and that the world, or at least my world would be better off if I were dead.
There were no thoughts of suicide, but seemingly endless pleading with God to just, "Take me home".
And in hindsight{Ain't hindsight wonderful?} it seems all so preposterous to be begging that which could sustain me, and did, to just "take me home."
But I did want to die, and with all the earnestness at my command, I wished for that to be.
The darkness of that place is still fresh in my mind and I have come to the realization that it wasn't a bad dream but was taking place in real-time.
I was dying, but I couldn't stop my heart from beating or from breathing with or without the oxygen.
I was dying, I know that now and the thing that I said wouldn't or couldn't kill me was certainly playing a role in my dying.
I didn't know that I was dying as it was happening because at the same time I had relinquished my will to live a terrific war started within me...I choose to call that spiritual warfare but others may call it something else, and if they do, that's ok...
Lying in bed being watched 24/7 was a defenseless 61 year old who had some of the cognitive abilities of a 6 year old, the physical strength of a 2 year old and the brattiness of a 16 year old.
What had happened to me was that, for whatever reason or excuse I had lost my personall one-on-one relationship with God and had just given up, or surrendered if you will, to the powers that be ans there are powers hat be who don't ride in the same herd as God.
I have for some time now I have referred to that as the Dark Side.
The Dark Side certainly had me...
I had simply forgotten//let go of/had/taken away from or whatever happened that Spirit, maybe a.k.a. attitude that I wasn't fighting this fight alone but that I had the Great Physician in attendance along with a host of His secular nurses/angels and that all I had to do was just rely on Him and them and that I would be "seen through" all this and that I would survive physically, emotionally, and spiritually.

This is/was the 2nd time in my life that my bucket has been empty and there's been a gaping hole in the bottom of the bucket and I had nowhere to turn.
The situations were different and the reasons for their occurring were different but there was a spirit component, both light and dark involved.
Both were incredibly difficult to be in and to get through, but I did and have.

This one, however involved an element of dying that the first one didn't.
At some level I think that somewhere along the line be it in ICU or on the 11th floor at the hospital I did die, maybe not physically but certainly to self.
To be in a position where I didn't care about anything or anybody, that I just wanted to "go home" and that it simply just hurt tooooooo much to live.
Lying in bed I can remember it feeling like I was in a cacoon, it was dark and I didn't have the strrength or the will power to try and break my way out.

I can remember two of the ICU nurses talking as I was pretending to be asleep and one saying to the other, "Is he going to make it?", and the response was, "I don't know."
Little did I know until the past few days that there were similar conversations being held in other places and other venues.
When I heard the nurses talk and the, "I don't know" answer to the question, I felt a glimmer of hope that maybe, just maybe "this" would all be over soon.

Somewhere in my library I have a book written many years ago titled, "The Dark Night of the Soul" and when I get home I need to dig that out and re-read it.

Although much of the time post-transplant runs together and I do have some blank spots, the memory of the awfulness of having no hope still lingers.

I am grateful that in that particular battle in that particular spiritual war zone that the Light Side won out...and it won out without my permission.
Good thing.

Back to the report(s) of my demise being greatly exaggerated...

Hi there,
   My how time flies when you are having fun?!?...
   I am now a day short of being in my transitional housing down here to Denver and it. as has been the case with virtually everything since we started on this Adventure has not been quite what I expected.
   I have been back to the hospital every day since I got here and those trips average 2-4 hours and thy exhaust me.
   I was told that fatigue and exhaustion would be companions for a while after the transplant (A month ago today!!!) but I had no idea how dang near debilitating "it" would be...and I am going to use that as an excuse, no let's make that reason for not blogging and returning e-mails. Another reason would be that my phone went belly up and that was my lifeline for not just phone calls, but texts and e-mails. I'm not back up and running yet, but we're getting there. Max borrowed me a T-Mobile Blackberry but I've had a devil of a time getting it to work although I now can make and receive calls but texts and e-mails are still on the horizon.
   Anywho, my sister Stacey left about an hour or so ago to go back to Iowa after being my caregiver and babysitter for a week and just handed me off to Bonnie who now gets to, with my permission take over many of the aspects of running my life for me and then in a couple of day I'll get handed off to someone else and that will be the case until I get back home to Fort Collins which I hope will be in a week or 10 days!
   I didn't know, nor was I told or prepped (on purpose which was probably a good thing) that the worst "period" of recovery from the transplant would be post transplant...and it has.
   I wound up in ICU for a couple of days after going through a brief period of, "I can't do this any more. Just take me home, please?".
   That's about as low as I've ever gotten in my whole life but I appreciate all of you who kept the faith and prayers up while I was unable to.
   That's a really scary place when you just, "give up" and want it to be all over. I never though I would be there, but I got there and in hindsight I can see how it wasn't me who pulled me through.
   As with most parents, there comes a time when your kid(s) become your reason for living even if you can't logistically be close to them and that's where I have been for a loooooong time now, like decades.
   And to have Matt show up just when I'm at the depths of despair was nothing more than a supernatural event...thanks, Dad.
   I already regret not blogging through a lot of those times because this vehicle will become part of my journal and part of my autobiography, "I Don't Do Rough Drafts."
   And a lot of what I need to remember is not how "bad" the "bad" was/is, but how I really did get through it and that tomorrow will really be better than today and how an artesian well of love and support sprung from seemingly no where and that through this whole ordeal I was never alone...ever.
   I'm gonna get off this incredibly uncomfortable chair now and move over to the recliner and rest...gee, I've got it rough don't I?
   I'm back in ouch...thanks!

Reports of my demise are greatly exaggerated!

Hi there!
I'm not gonna detail th lat couple of weeks in this post...it's late and I don't remember some of it!
Going to ICU was a real experience; having Matt show up just as I was getting serious about just cuttin' loose and "going home" certainly could be called a miracle; having people come visit me and having absolutely no recollection of them being here; being told I could get discharged and having no place to go to until I/we just gave that dilemma to God and He took care of it; having my hopes of getting discharged dashed after being told on two occasions I was given a date for discharge...the latest being tomorrow (Sunday the 19th at noon) that I'm holding my breath to make sure...as if I have anything to say about it...happens.
We'll talk tomorrow and I'll update you...and me...!

Update (by Doug)

Friends,
Your prayers & well wishes mean so much to Pete - PLEASE continue to keep him in your prayers and thoughts as he journeys through a difficult phase of treatment.

As he last reported, the days leading up to his stem cell infusion caused some cognitive problems due mostly to the high chemo doses he was subjected to.

His stem cell infusion (8/25/10) procedure went very well - although side effects occurred immediately thereafter (an expected outcome).  Within just a day or so, Pete developed additional health concerns which have taken time to control and manage (he was completely immune-compromised and highly susceptible to infection until regeneration of cells began).

This part of treatment has been extremely difficult on Pete, leaving him unable to communicate with you via normal means (cell, email, blog, etc.).  Additionally, fatigue and other issues have "robbed him" of the desire to do so too.  Hence, one purpose of this post.

His siblings have travelled to Denver over the Labor Day weekend and are with him now as he moves forward in the treatment program.  We feel his basic needs are being met at this time and would request visitations be "put on hold" until further notice.  We should await Pete's "green light" to resume those visits.

His medical team at UCH have been superb ... he is receiving the best medical attention & treatment options associated with MM.  I can't express my gratitude deeply enough for the care, professionalism, love & quick actions displayed by staff on the 11th Floor and all associated with the BMT program.

At this time, his treatment plan consists of arresting the health concerns plaguing him and we anticipate that his eventual discharge to convalesce in an apartment near UCH will occur before month's end.  Regeneration of cells was detected this week - a huge step in the right direction!!

His spirit remains strong despite all the tribulations he has faced in recent days - and much of that is due in no small part to the many, many friends who continue to pray for his speedy recovery.  Thanks!