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!)

Chemotherapy - Cycle 1, Day 1

What a day today was. We woke up bright and early to leave Courtnie with Grandma and Grandpa. We then headed for Dr. Lee's office to begin the first dose of chemo.

Because I caught Courtnie's cold I was already feeling crummy. I thought that catching the cold might not be a bad thing - give me a head start on feeling crummy. Add on top of that that I couldn't eat or drink in preparation for surgery later on today to put in my port and the day was pretty challenging.

Me before leaving for Dr. Lee's office in the morning.

The nurses at Dr. Lee's office, Marybeth and Jodie, did an outstanding job of getting me prepped and hooked up. The original plan was to try to get all the chemical in me before my 1130 check-in time at the hospital for surgery. The nurses were quick to say that there was no way that was going to happen because the chemical would not even arrive until 10 o’clock or so and they want 4 to 6 hours as a general rule to put it in me to watch for allergic reactions, etc. So work was done behind the scenes to see if things could be changed and they were – surgery would now be around 2 or 3 that afternoon.

Meanwhile, I sat at Dr. Lee’s office getting my first dose with Kimberly by my side the whole time. This chemical, Rituxin, is the least harsh and didn’t cause me any major problems as I got it. Got a bit of an allergic reaction which caused me to start breaking out and made my face flush. I was a little itchy as well. All in all, the morning went well. They gave me an intravenous of Claritan to knock down the allergic reaction to the chemical. The biggest pain was having to go to the hospital to have my ‘port’ put in. The nurses at Dr. Lee’s office stopped my chemo to be resumed later and Kimmie and I drove over to the hospital to get checked in with the surgeon.


Me at Dr. Lee's getting Rituxin

The surgery for the port placement is pretty straight-forward. They cut a pocket in your chest, place a catheter that runs along large vein in your chest to the main vein returning blood to your heart from the top part of your body. The plan was to do a general anesthesia and knock me completely out and I'm all for the knocked-out sort of surgery. The surgeon explained that it can be done under a local anesthetic but sometimes in that "twilight zone" a patient still reflexively reacts to light changes, sounds or what have you and because he is wielding a very sharp pointy object very near a lung he prefers to knock people out. I knew already that we were going to get along great... and off to dreamless state I went.

Well, the surgery turned out well, but the aspirin regimen I was on made the blood very 'slippery' and so we had a bleeding issue which prolonged the surgery. Not a big deal, was brought under control and I'm here typing this. However, the anesthesiologist was unable to place a breathing tube in my throat to administer anesthetic gas to keep me under during surgery because of the lymph nodes in their constricting things. So, they worked around that (I don't know how but am assuming they used more IV drugs to keep me under and used a mask to keep me breathing). Long and short of it, it turned out well, the port is in and I returned to Dr. Lee's office to get the remainder of my chemotherapy for the day.

When we returned to Dr. Lee's, Bill Bone met Kimmie and I with Japanese food (mmmm, sushi!) from Tokyo Teriyaki. That was truly a highlight of the day! Having not had anything to eat or drink since the day before dropped me from 206 lbs to 203 lbs and I was an unhappy starving camper. The remainder of the Rituxin was put in me and we went home after picking up Courtnie from Grandma Bone's house along with a turkey dinner for the girls.


This is me with Dr. Rovira (Dr. Lee's partner who did the bone marrow aspiration and biopsy - if you ever need one of those he's the guy to see). You can seen the bandages from the port placement surgery I just came back from.

It was a long day but the only thing notable for difficulty is all my muscles (both of them) really ached after getting out of surgery. I learned from the surgeon that he used a drug that paralyzes all of your muscles and that soreness is from that. The soreness is such that it was all I could do to get out of bed the next morning to go to St. Anthony's North Hospital to check in for the remainder of my week of chemotherapy. The other thing going on is some soreness in my throat from when they tried to put the breathing tube in but it isn't a big deal.

That pretty much wraps up Day 1 of my first "cycle." I'm loving all the e-mails and messages - thank you. Remember, appreciate life - cause you never know!

The Big Meeting with Dr. Lee

Today was the big day to learn exactly how involved my MCL was.

Our appointment started off with a bright moment - on arrival we signed in and I sat down in the waiting room while Kimmie went off to inspect the restroom. No sooner did my butt hit my seat and out from somewhere in the exam room area trotted Cashew. Cashew is Dr. Rovira's Golden Retriever. Dr. Rovira is Dr. Lee's partner. You can imagine my delight and surprise to see a Golden headed my way on this day and in this setting. I was thrilled!

Cashew trotted directly over to me and in the way that I believe only a Golden Retriever can reminded me with those brown eyes to keep a Golden's attitude about me - the same advice I have received from my own Golden, Aspen, on numerous occasions. Cashew and Aspen's advice are summed up in the last six lines of Bob Marley's famous song:

don't worry, don't worry, don't do it,
be happy, put a smile on your face,
don't bring everybody down like this
don't worry, it will soon pass whatever it is,
don't worry, be happy,
i'm not worried

Then Cashew left to attend to others. Shortly after that the medical assistant took me back for what I thought was to be yet another blood draw. Not this time though, just weight and blood pressure and off to meet with Dr. Lee.

Dr. Lee met us in an exam room and shared the results of the tests I'd undergone throughout the week. Significantly, the PET scan revealed that the lymph nodes involved are confined to areas in my neck and pelvis. Surprisingly, the lump on the left side of my throat that I noticed is the smaller one, my tonsil (a lymph node) on the right side is the larger and I can't feel or see it.

The rest of the body appears clear of cancer. A welcome surprise according to Dr. Lee in that my torso and organs all seem to be healthy in spite of my 38 years of abusing them. The greatest 'activity' is in my tonsils and that is classified as moderate. All the other areas reflected minimal activity. 'Activity,' i.e. where cells are absorbing the radioactive sugar used for the PET scan quicker, is the indicator of where the cancer is and the degree (moderate vs. minimal, etc.) is an indicator of how "hungry" those cancer cells are acting - which translates to how aggressive they are being as far as I can tell. So this was good news.

The bone marrow aspiration and biopsy is still being fully analyzed but preliminarily it appears that my bone marrow is not significantly, if at all, involved. That is also good news because that involvement would mean the likelihood of my having to do a bone marrow transplant (BMT) down the road. Right now, Dr. Lee has confidence that I don't have bone marrow involvement but a test that is currently in process and won't be done for 5 or 6 days will give us a definitive answer.

So what this all means is that I have Stage 3 MCL - but that is because I have it in a plane of my body below and above my diaphragm and on opposing sides of my body. My sense is that Stage 3 is a broad classification in which might be further termed by me as a "good" or "bad" Stage 3. Dr. Lee left me with the feeling that this is a "good" Stage 3 in that the volume of cancer is small and it is limited to those two areas of my body.

The MUGA heart scan revealed that my heart is healthy and can weather the intensiveness of the chemotherapy. The big thing that is being looked for here is the ejection fraction percentage of the left ventricle of the heart, which is one of the most important metrics in assessing heart performance. Healthy individuals typically have ejection fractions greater than 0.55, mine was measured to be greater than 0.60. More good news.

What's Next

So now, with the testing done and it being determined that I am a Stage 3 the plan is to begin what by all accounts is a most intensive chemotherapy named R-HyperCVAD.

The R is for Rituxan (Rituximab) which is a cancer medication that interferes with the growth of cancer cells and slows their growth and spread in the body. I will get this Monday morning and it is given at Dr. Lee's office and I would then typically go home afterward; This first Monday of treatment being different because I will be going from the chemo straight to the hospital for surgery to install a Port. More on that in a bit.

The term 'Hyper' in HyperCVAD refers to the hyperfractionated nature of the chemotherapy, which is given in smaller doses, more frequently, to minimize side-effects. 'CVAD' is the acronym of the some of the drugs used in courses A and B. The protocol was originally developed to treat leukemia in young, fit and ambulant patients. Hyper-CVAD chemotherapy is generally reserved for use in the treatment of serious and aggressive forms of hematological malignancy, MCL fits that. There are serious side-effects and complications arising from the administration of the various agents, which require careful management in an appropriate health-care setting which is why, starting Tuesday, I will be calling St. Anthony's North Hospital home until Friday.

On this first week of HyperCVAD I will be doing course A. That means I will be given the following drugs:

Cyclophosphamide (Cytoxan®) which is an alkylating agent
Vincristine (Oncovin®) is a mitotic inhibitor
Doxorubicin (Adriamycin® or Rubex®) is an antibiotic with anti-tumour effects
Dexamethasone is an Immunosuppressant
Cytarabine or Ara-C (Cytosar®) is an antimetabolite
Mesna (Uromitexan®) is a compound used to reduce the incidence of haemorrhagic cystitis, a common side-effect of the administration of cyclophosphamide.
Methotrexate, an antimetabolite

Following this week of chemotherapy I will be going home on the weekend, and beginning three weeks of recovery to build up my immune system. After those three weeks I return for another round, "course B," which I will have more information on when that time arrives. For now, what I've been told about course B is that it is more intense than course A.

Going back to the port I will be having surgically installed this Monday afternoon. This port is put in for two reasons mainly. First, with a port I won't have to be constantly stuck with needles in veins to get the chemo, draw blood, etc. Second, the drugs of this chemo are too harsh and it helps to put them in near the intake vein of the heart, the superior vena cava, and allow them to be pumped around.

A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava.) The septum is made of a special self-sealing silicone rubber; it can be punctured up to one thousand times before it needs to be replaced. Sounds pretty cool and after being a pin cushion this week I'm happy to get one installed.

In Summary

All in all the news is good and the prognosis is better than I thought it might be. Dr. Lee says that given my younger age (guess that's all relative) and good health - making me able to do the particular chemotherapy I will be doing, he is confident that the cancer will be wiped out. The problem with MCL is more in its tendency to want to come back. However, Dr. Lee feels that we have a 70 to 80 percent opportunity to have this "cured," by which he means it is gone and stays gone.

For right now the primary concerns are related to the toxicity of the chemotherapy, which can kill, and the infections that I will get when my immune system is down. Both of those concerns are going to be monitored very closely throughout my treatment and are simply unavoidable.

This post is being published ahead of posts which are going to describe how we got to today but this was important information that many have asked for.

Thank you for your continued support, I am truly humbled by the sheer number of people that are calling, e-mailing, and seeing us.