Happy Birthday Kimmie!

We had a really nice evening at the home of Bill and Noni - Kim's folks. We celebrated Kim's birthday with the menu she chose - steak, artichokes and spinach dip. Reminded me of old times in California when we got together with her parents and had such a great time.

Besides the fact that my steak had to have been pushing several pounds, I was amazed at how good it tasted! Had not had steak in a long time.

It was also awesome to have Kim's sister drop by for presents and cake - she is dearly missed and we often remember the days when we were a threesome.

Snow

Things turn out. There are those reading this, new friends of mine mostly and some old friends too, that have had the pleasure of that 'first' go-around with chemotherapy and/or who have had to go through some other experience which tested them in some similar way. That line by Margaret Hamilton playing Elmira Gulch/Wicked Witch of the West - "Ohhhhh... What a world! What a world!" as she is melting away came to mind for some reason. Let me not steer you wrong - today was better and not just because I decided it would be (although that did play into it). That experience that some have had is fantastic - and I don't mean 'great;' rather, I mean the other definition of the word which is: so extreme as to challenge belief.

It still took me longer to crawl out of bed than I'd hoped this morning. And it was my kind of day - rainy, spring snowy mix at the time - something which I would normally wake up to out of a dead-sleep in the middle of the night as part of my abnormal internal wiring. As I waited and listened to my family beginning their day without me I almost felt as though I were in the La Brea Tar Pits - stuck, waiting for that instinctual and animal part of me to trigger the alarm that says - "GET MOVING!" That was tempered by the rational and human part that was saying - all systems are not currently go, if you move that feeling in your stomach may be more than you think and ditto for the pain. Ultimately, the former won out and I got out of bed.

Fortunately, I live in the company of angels and their "Good Morning" warmed me to the core. And, to further put a point on it, God changed that rainy, snowy mix that was falling to the most beautiful, fluffy snow at that moment. Things turn out. Now, now I have that - the memory that for whatever hardship I thought I'd had, that those involved and connected to me went through with me - things turn out... it passes.

Far as what I had to do today for treatment - just had to endure a finger-prick in order to give a blood sample to test my blood counts. My white blood counts are very high - indicating that I'm probably fighting a bug of some kind. Not surprising with CJ having an earache on the tail-end of the cold we shared as I went into chemotherapy #1. I'm feeling fine, I can't tell that I might have a cold - have maybe a stuffy nose, maybe a sore throat, et cetera - hard to distinguish ailments which are related to the chemo versus maybe having a bug. Anyhow, this first of my daily blood tests this week did not raise a significant concern with the doctor's office and they allowed me to leave today. Or did they tell me to stop loitering?

We followed my appointment with a probably overdue one for CJ. My poor dear has infections in both ears but now has new meds that should get her feeling better. While Kimmie and CJ were in with the pediatrician, I waited outside (pediatrician's office probably not a smart place to hang out for me) and enjoyed the fresh air. That word enjoyed needs to be emphasized. I stood out there, some snow pellets intermittently falling, trading off the effort it took to stand there for the opportunity it was to stand there. This time, I was thankful for the extended wait that is typical at the pediatricians.

I've added a YouTube video of a commencement address by Apple Computer's Steve Jobs. The text of that speech is here - http://news-service.stanford.edu/news/2005/june15/jobs-061505.html but I encourage those interested to watch the video at http://www.youtube.com/watch?v=D1R-jKKp3NA. It is important throughout, but I want to say that a sentence stood out as something I felt important for everyone to think about - "It means to try to tell your kids everything you thought you'd have the next 10 years to tell them in just a few months." Important because I personally didn't fully live this way before and, backing up the clock to a time before my diagnosis with MCL, I didn't realize how true it is that everyone alive presumes too much if you 'thought you'd have the next 10 years.'

Weekend

Hard to get motivated. That would sum up the feeling I've had this weekend - these chemicals really take the wind out of your sails. I cannot say enough how great it is to be home and how great Kimmie and CJ are to be around. The most difficult thing all weekend has been not being able to do much besides sit or lay down and watch helplessly as Kimmie is having to do so much.

Far as me and side-effects, I'm mostly just wiped out. On Saturday I went back to the hospital to get a scheduled Neulasta (http://www.neulasta.com/) shot in the stomach. This is used to boost white blood cell count in order to ward off infections.

Kim is so amazing. I really don't know how she does what she does - on Friday she worked an opening shift, came home and took care of me and CJ all day, then Saturday night CJ woke up throughout the night and she took care of her, and now (on Sunday) she has been up all day playing with CJ and cleaning... I am so unhappy to not be able to help because of lack of energy and fear of picking up an infection.

Have been working my way through the cards and e-mails and phone messages - I, again, cannot adequately thank everyone for the support and well-wishes. More than once since coming home from the hospital I've opened a card, read or listened to a message, that has helped more than the sender will probably ever understand because at that particular moment it was the boost that got me from one minute to the next.

Chemotherapy, Cycle 1, Day 5

Exciting day today. First of all, they let me sleep from the end of my early morning chemo - so from about 3:30 AM to almost 7:30 AM, except for the minor interruption of blood draws at 6:00 AM - which unfortunately or fortunately are so routine I almost slept through it.

But that block of sleep was the best I had during my stay. The morning was pretty uneventful, they added a number of new toxins to me as well as some good supportive drugs. Bill and Noni came by to visit and take some of my accumulated baggage home. Towards noon the chemo nurse gave me two new chemotherapy drugs which were contained in huge syringes and put in to me via my Port. It is crazy the stuff they put into you - the nurse warning on one that it burns right through skin in seconds if exposed to outside environment (hope I don't have any air leaks - ha!). More thoughts on the crazy stuff inside me in a bit.

After these last two doses (for today), and disconnection from all the tubes and my IV stand, I was at the mercy of the hospital's discharge nurse to get out of there. My release was anticipated to be around 1:00 PM. Well, several hours after that anticipated time I was given my discharge papers with a reminder that I needed to return tomorrow for a shot in the arm whose intent is to re-start and boost my white blood cell production / immune system.

Kimmie, meanwhile, had been busy all day cleaning and shopping in preparation of my return and was now there for me as usual to drive me home. Home! That moment, walking out of the hospital and breathing outdoor air for the first time in 4 days was surreal. A beautiful day - would have been even if it hadn't been sunny! So hard not to be able to kiss Kimmie, but just to be able to stand shoulder-to-shoulder and ride in the car side-by-side with her was heavenly.

About the crazy stuff they put in you for chemotherapy. It is strange, strange stuff - it is so toxic that one of the primary side effects is the risk of dying from the substance itself, the list of side effects for the main chemo I had all week is three pages long. And you can feel it inside of you. I'm not going to explain it accurately - it isn't like you are on fire or in pain because of it - it is just there. The purpose, in a simplistic way, of chemotherapy is to erase the cancer right down to the molecular level.

For me, as it does that, it is erasing me. Thankfully, the soul and brain are untouched by the physical part of that - allowing the metamorphosis to health from disease to be tolerable in that I know that I will re-emerge as me. But it all gives me a renewed appreciation for the stories I admire of people who have found a way to take themselves out of a truly unpleasant place because of the power of one's spirit. The prisoner's of war that endured their torture and captivity through mental games of golf or writing a novel in their head being but one example. It is so important to see the bigger picture and expand what you think of where you are in life.

This process of being "re-booted" is felt. I'm sure half of it is the knowledge of what the chemicals are doing. But you can actually feel it - inside I'm getting destroyed for the ultimate purpose of being healed. Small price to pay for staying alive longer but gives me a good understanding of what I'd always "heard" about when people talk of chemotherapy and how difficult it is.

Once again, I thank everyone for your support. This war cannot be fought to a victory alone by anyone who has cancer and that became immediately evident the minute I got my diagnosis.

Chemotherapy, Cycle 1, Day 4

I'm happy to report that this was another uneventful day as far as any side-effects or problems.

Definitely happy that my stays at the hospital are confined to a week at a time. Hard part is being away from my beautiful Kimmie and Courtnie. There are so many things I took for granted before this - simple things like going to the bathroom, taking showers... life is so cool.

I have to agree with an interview I watched of Lance Armstrong, the world class bicyclist who is a cancer survivor and founder of Livestrong, The Lance Armstrong Foundation - http://www.livestrong.org. In that interview Lance said that he would not now dream of not having had cancer because of the person it changed him into. I am sure that I am not even the latest person who is faced with having cancer that feels exactly as Mr. Armstrong said - changed.

I added a profile section to this blog. There is something I'm about to change for those that already read it - the profile was nearly a cut and paste from another person who is facing MCL and that person talks of a terminal disease. I'm changing that to 'potentially terminal.' Life itself is a terminal disease if you think about it. But specifically, the treatment of MCL is making huge strides - a "cure" does not exist yet but it appears that some people are potentially being cured under the newer treatments, or at least being put into complete remissions that allow people to live out a full life to die of "normal" causes. The statistics aren't there because the newer treatments don't have a long enough history to say that they are the cure. In fact, they aren't - the treatment I'm doing R-HyperCVAD has proven very successful, but not for everyone. So, as I said, I'm making the change to "potentially terminal" to reflect my belief and hope, bolstered by the confidence of Dr. Lee and information that is out there, that this current treatment will result in a complete remission which, eventually, would be termed a cure.

Today was again highlighted by visits from family, co-workers that really came out of their way to see me, and a retired co-worker that is always a true pleasure to see.

Without naming him - I want to give a special thanks to a co-worker that visited me early today that is making extraordinary efforts on my behalf and offering a level of support that is over the top.

I get sprung from the hospital tomorrow afternoon. Am so looking forward to a shower at home and a full nights sleep! More importantly - I will be with my family again, they are dearly missed.

For those that are local, once I am home I would appreciate calls before visits to my house only because I won't be home all weekend. Going to be spending as much time swinging CJ as I can and spending time with Kimberly.

Chemotherapy, Cycle 1, Day 3

Great day!

Same routines today for my chemotherapy so won't bore anyone with that. I am feeling just as good as before as far as side-effects. Can't say enough for the preventative drugs they use!

My day was highlighted by visits from family, several co-workers, my office's pastor, and a good friend of the family's. Add to that a tidal wave of calls and e-mails.

I've said it before and will continue to say it - I am so thankful and humbled by the outpouring of support.

The other nice thing about today was that I was able to get probably 6 hours of total sleep - a LOT better than yesterday's 2 hours.

Almost Forgot

This was sent to me by Grandma Bone, who is part Cherokee and I wanted to share it.

Do you know the legend of the Cherokee Indian youth's rite of passage?

His father takes him into the forest,
blindfolds him and leaves him alone.

He is required to sit on a stump the whole
night and not remove the blindfold until the
rays of the morning sun
shine through it.

He cannot cry out for help to anyone.
Once he survives
the night, he is a MAN.

He cannot tell the other boys of this
experience
because each lad must come
into manhood on his own.
The boy is naturally
terrified. He can hear
all kinds of noises. Wild beasts must surely
be
all around him. May! be even some human
might do him harm. The wind blew the
grass
and earth, and shook his stump, but he sat
stoically, never
removing the blindfold.
It would be the only way he
could become a man!

Finally, after a horrific night, the sun
appeared and he
removed his blindfold.

It was then that he discovered his
father sitting
on the stump next to him.
He had been at watch the entire night,
protecting his son from harm.

We, too, are never alone.
Even when we
don't know it,
our Heavenly Father is watching over us,
sitting on the
stump beside us.

When trouble comes, all we have
to do is reach out to
Him.

Moral of the Story:
Just because you can't see God,
doesn't mean He is not there
'For we walk by faith, not by sight.'
~
2 Corinthians 5:7 ~

Chemotherapy, Cycle 1, Day 2

Well, as I mentioned in the last post - I rolled out of bed early (by some people's standards) - in the morning with both of my muscles refusing to work very well and with some extreme soreness. Grandma Bone, one of the many incredible people in our lives, came over to sit house until Courtnie woke up and Kimmie and I went to check in at the hospital.

All went smoothly but it is still hurry up and wait - thank goodness I was taught that lesson so long ago thanks to the U.S. Army and Department of Defense. The oncology "floor" is actually the surgery and oncology floor with a mix of patients here for those type of things. Checking in this morning were two other chemotherapy patients - one a 21 year old with a much more difficult road ahead of him. The majority of the floor seems to have people who are going to, of have undergone, some serious surgeries. There is one other cancer patient that has been battling their cancer for a year (the majority spent here in the hospital) this current stay has been 4 weeks now - a very nice couple with kids that stay every now and then overnight at the hospital, and they play a mean poker game.

Once we were settled in the room they went about the business of making a pin cushion out of me trying to find a good place to have an IV line. That was real fun (sarcasm). Finally they called the Surgery Nurse who coincidentally was the one who put my IV in yesterday for the port surgery and she stopped the lets hurt Gary game and got an IV going. Thankfully that IV line stays until it is removed on my discharge. They then proceeded to load me up with several "pre-meds" - one called Mesna, which helps protect my bladder from the chemo drugs (you pee out 5 to 20% of the chemo drugs at full strength; another IV bag had sodium chloride which serves mainly to hydrate me and keeps the IV lines opened up; and another IV bag had a drug to fight nausea. That all goes to the IV in my arm.

While they did the above, the dressing on my port was removed and we all got to see it for the first time. Dr. Lee, who came by to check on me looked at it and said it looked good, the gaggle of nurses made it "surgical clean" and then place an IV line in the port and secured that to my now less hairy chest. Then they made sure that it had good blood flow and then they pushed through some saline to make sure that everything was plumbed correctly. Then, because I had been home since the X-ray they took of it yesterday after the surgery, they brought the radiology technician in to X-ray me again to ensure that everything was where it should be. It is.

At 11:30 AM I began my first dose of Cytoxan. This takes 3 hours to put in so I just hang out, walk around with the pump that puts the drug in, check e-mail, etc. It was uneventful as Dr. Lee said it would likely be.

As I write this I am going to get some shut eye before they wake me up for round 2 for today, I'll get hit with chemo every 12 hours until Friday. That wake up call comes at 11:00 PM and will have me up to around 3 AM. Then I will try to sleep again into the morning.

That's about it for today. The food has been fine - shared French Toast, eggs, bacon, cream of wheat, coffee, juice with Kimmie in the morning; had Caesar Salad, and pepperoni pizza for lunch - saving the chocolate cake for Kimmie's much anticipated visit with Courtnie in the evening; and had salmon, rice, red potatoes, cheesecake for dinner.

The most awesome part of this day was my evening visit with Kim and CJ - they brought me all kinds of snacks and really hooked me up for my stay. I have the best wife and daughter ever!

Here's me and Daddy's little girl, I'm eating dinner and CJ is testing my snacks to make sure they are acceptable for Daddy. In the foreground is the aforementioned chocolate cake for Kimmie - oh wait... it's gone. (Photographer must have ate it!)