'Roids and More Tests

Well the dexamethasone worked wonders and I was able to help out at Meals for Missions last night with my Scout troop and then get a real night's sleep - almost 6 hours!!  The combinations of the steroid and morphine has made me almost feel like a normal human being today. But I've come to learn that there is a lower valley after each and every one of these chemically improved peaks so I fear what's coming along next!

Today was spent catching up on work and then a visit to the hospital for an echo-cardiogram of my heart to establish a baseline before I start the chemo.  Apparently some of the drugs can do some major cardiac damage so they want to establish a baseline and then continue to monitor throughout treatment.  The appointment went well, just a lot of cold gel and an ultrasound wand.  Now I can empathize with what Donna went through during our pregnancies!!

On a different note, I've literally been overwhelmed by calls, texts, emails, messages, etc. from friends and family wishing me well and offering to help.  I'm prideful and stubborn so haven't asked for much help other than prayers but even what little I've asked has been provided in an overabundance of love. I had a small wish list on Amazon for some comfort items to help with chemo as well as a few gift cards to help us buy lunches at the hospital and pay for medicine co-pays and non-covered items. It seems like I now have enough to last for much longer than treatment.

Some of the gifts didn't come with information on the sender but for those that did, I've just finished writing hand-written thank you cards to send out in the mail tomorrow. To those that didn't, I humbly and lovingly say thank you from the bottom of my heart!  You know who you are and so does God. That's all that matters!

And thanks to everyone who has sent prayers and love my way. We're all truly blessed and all we really need in life is the love and support of others to get us through the hard times so that we're strong enough to return the favor in the good times.  That's how we all get through this thing called life.

Spoke too soon!

So my pain level, even with morphine, has been gradually increasing since Saturday night, 12/1.  I've tried to take the morphine only when needed which is generally at night but the pain is creeping earlier and earlier into the evening and afternoon.

Today was actually a good day, my new normal, and I fell asleep in the recliner around 9:30 PM.  I woke up at close to midnight with some of the worse back pain I've ever experienced at around midnight. Seriously on a scale from 1-10, this would be an 11.5 or 12.  I was shaking/shivering uncontrollably and couldn't formulate complete sentences to tell Donna and Chey what I needed. I took some meds and moved from the recliner to the bed without any relief but with the hopes that the meds would prevail and I could drift off to sleep. It never really happened.

I finally emailed my oncologist around 5:15 in the morning to let her know what I was experiencing.  She was quick in getting back to me by mid-morning and seemed genuinely concerned. We added a new steroid, Dexamethasone, to my ever-growing list of prescriptions.  She's also going to try to move my chemo up from Thursday to Tuesday which is the same day I have my port-a-cath installed. I'm a little nervous about that since I know both treatments are a little tough and doubling down on a single day will also be more difficult, but I trust her judgement.

Finally received some good news from a doctor today! The orthopedic specialist doesn't think that there is any long term damage to my spine. She thinks the tumor, which is wrapped around my L4, is primarily in the softer spinal cord tissue and hasn't caused any major damage to the bone so surgery probably won't be necessary. Thanks for all the prayers!

Treatment Plan

I assume that most of my blog readers are also Facebook friends but I thought it would be appropriate to catch the blog up with recent developments or updates.

I met with the new oncologist on Thursday 11/29. Unfortunately, the PET scan identified several new sites where there are affected lymph nodes besides the three areas we knew about. There are now affected areas near my left collarbone and right upper back as well as a few in my lungs but all the new areas are very small so we feel we’ve caught it early.

The current plan is to do six rounds of chemo (RCHOP) plus two-three rounds of Methotrexate which is a special drug. The chemo is given every three weeks via IV as an outpatient procedure at the treatment center. The first dose will take about 8 hours to administer but subsequent doses will take around 3-4 hours to administer. The Methotrexate has to be given inpatient during a 2-3 day hospital stay each time.

Here’s what we have scheduled so far:

• December 3rd: Meet with an orthopedic surgeon to determine what care I’ll need for my L4 vertebrae. The cancer is wrapped around the bone and once the cancer cells are destroyed, there may not be  enough support for the spine so we’ll have to figure that out.

• December 6th: Meet with a cardiologist and have an echo/ultrasound done of my heart. The chemo and Methotrexate can cause major heart damage so they want to get a good baseline and monitor closely.

• December 11th: Outpatient procedure to install a port-a-cath in my chest. The device will be right under my skin with a catheter leading into a major heart vein.

• December 13th: I’ll start my first chemo session at 7:15 AM. This first one can take around 8 hours as they administer the dosage slowly in case there is any adverse effects.

x

At last some relief

The pain meds that I've been taking are becoming less and less effective at managing the pain, especially at night when it is at its peak.  After discussing alternatives with my doctor back and forth via email (ain't technology great), he suggested that I try morphine to help control the pain.

For some reason, that hit me in a strange, scary way.  To me, morphine is a dangerous and addictive drug that was used to provide pain relief during the Civil War. It is something that they give to sick people.  Yes, my doctor confirmed, reminding me that I am sick with a mass in my vertebra causing significant pain.  That's what the drug is designed to treat.

A bottle of morphine looks no different than a bottle of aspirin or Tylenol, except the pills are a little smaller, almost non-descript.  I carefully read all of the warning labels and side effects, noting that mixing the medication can cause very serious reactions.  Goodbye to my nightly mixed drink for now.

Almost like clockwork, the stabbing pain started around 7 or 8 PM.  I nervously opened the bottle and took a pill along with a cold glass of water.  And slowly, over the course of the next 30 or 45 minutes, the pain melted away.  I sat on the couch and closed my eyes, drifting off into a deep and restful sleep - the first in months.

I can't find any note that morphine causes insomnia, in fact drowsiness is one of the biggest side effects.  However I only slept for a few hours before waking up and moving to the bedroom.  Although still pain free, I tossed and turned as the minutes turned to hours without falling back to sleep.  It's ironic to finally be comfortable enough to sleep but unable to succumb.  I thought maybe typing this out to catch up on this blog would help so at 4:30 AM, I'll close the laptop and try again.

Thanksgiving

We enjoyed several Thanksgiving dinners this week, realizing that we have so very much for which to be thankful.  Unfortunately Donna has been sick with a head cold for most of the week and Cheyenne had to work both Thanksgiving day and Black Friday.  I took Tuesday afternoon and all day Wednesday off of work to spend time taking care of Donna, doing some chores around the house and cooking our own Thanksgiving meal, which we ate on Wednesday evening since Cheyenne was off.

We also had accepted an invitation to go to our very close friend's house on Thanksgiving day and I made a homemade cheesecake and a few other simple things to take there.  We hated to leave Donna home alone while she was still sick but she insisted that Hunter and I still attend our "Friendsgiving" Thanksgiving meal.  We enjoyed a fantastic meal with several great friends: pecan whisky, smoked bacon-wrapped cheese stuffed jalapeno poppers, turkey, smoked bourbon infused ham, and all the sides, trimmings and desserts!  The company was even better as we watched football, Youtube videos or just sat around and talked about anything and everything.  Another 20 minutes and we could have solved all the world's problems.

This Thanksgiving, probably more than any other in recent memory, reminded me of just how much we have for which to be thankful.  Health cares aside, I'm surrounded by family and friends, have a terrific job with a great boss, coworkers and employees and have the opportunity to spend time giving back to those in need by having fun.  I am truly blessed.

The diagnosis

I'm sure most people have heard the phrase "be careful what you wish for".  Today was my turn to ponder the wisdom behind that old adage.  The oncologist called late this afternoon to give me the results of the biopsy.  Not a nurse, an assistant but the doctor, Dr. Berenzon. Maybe that's normal for cancer patients but I've been impressed by his professional but personable demeanor.

So the diagnosis is non-Hodgkins lymphoma.  I'm not sure the exact sub-type now, due to the fact that I was driving (and had pulled over for the call) and Dr. B's Russian accent.  It doesn't really matter for now, what matters are the next steps.  This type of cancer is curable but I am considered stage 4 since it is in multiple locations.e

I am being referred to a lymphoma oncologist at Wake Forest who is more familiar with this type of cancer and can hopefully provide better outcomes.  And I need more tests - this one a PET-CT scan that will look for any additional cancer cells that have metastasized throughout my body.

We wanted an answer and we've got one.  Be careful what you wish for.

My enemy

Pain sucks. I've had minor and major pains in the past. A twisted ankle that hurts for a few days or kidney stones that cause a sharp, debilitating pain that no amount of re-posturing can make disappear until the stones pass. The pain from this cancer is very different. It's there in the morning when I get out of bed but slowly retreats to the background as I drink my morning coffee and stretch out from a restless night's sleep. It's mostly gone for the majority of the day, so long as take frequent breaks from my desk chair to stretch and walk around for a bit. Staying active keeps it at bay. Or maybe it's the sunlight.

I've decided that I should give it a name. Seems weird and strange but if I can name my adversary, then I can defeat him. Especially without knowing what's causing the pain. Lying in bed, unable to escape the pain and unable to sleep, my mind starts mulling over names. George was the first name that stupidly popped into my head for no reason. But he's not a George.

I reflected on the bad guys from the movies of my childhood and Vader quickly came to mind. That seemed to fit better - dark and sinister and foreboding. I could see Vader extending his hand to use the force to cause me to twist in agony. But Vader ended up renouncing the dark side for some small measure of redemption in the very end. And I can't see any last minute redemption for the cancer growing inside me. Then it came to me. Palpatine or Darth Sidious. The dark, shriveled, gray, ugly master of the dark side that could cause excruciating pain with just a wave of his fingers. That's exactly the picture of what I have growing inside me. Only a true nerd would name his cancer but for now, Palpatine is my enemy.

Almost like clockwork, he returns each evening. Slowly creeping out of his daytime hiding place with a few sharp jabs in that space between my left kidney and hip bone. I can almost hear him talking to me in some creepy Stephen King voice - "hey champ, did you miss me? I missed you." The jabs get more and more frequent - hot, stabbing pain in that same spot over and over. Now that we're aware of each other, the pain quickly spreads down my left leg, sharp and hot in my femur and then eventually dull and throbbing in my shin. We spend the evening and the night together - aching, cursing, stabbing, readjusting.

The pain meds take the edges off of the sharpest of the stabs but do almost nothing for the rhythmic throbbing. At some point, a combination of the pain meds and a muscle relaxer allow me to drift off for a couple of hours of sleep before I'm awakened by another stab. Another painkiller and muscle relaxer, 4 hours too soon helps me get back to a restless sleep for a few more hours. Wash, rinse and repeat.

So hear I sit, nearly a week past my biopsy, still waiting for results. I assume that Veterans day has caused a delay and if so, I can't complain versus all those that gave so much. So we sit and wait, back and let throbbing until we know WTF is wrong with me and how we're going to treat it.

At times like these, I'm thankful for the amazing friends, co-workers and family that have show their support for me and also the family that I love and hold dear. At this moment I'm clinging to the hope that this is beatable, that my friends and family will support us and that no matter what we can all be kind to each other, each and every day.

At this point here's my FAQ:

• So what's wrong? I've no f-ing clue.
• What type of caner is it? I've no f-ing clue.
• What stage are you in? I've no f-ing clue.
• What's the prognosis? I've no f-ing clue.
• How can we help? I've no f-ing clue.

I don't mean to be crass but I've never been one to ask for help and I'm completely at a loss in this extraordinary situation. I work for a great company with a great boss, have amazing friends and a wonderfully supportive family. The bottom line is that we're all taking one day at a time, living like everything is normal until we positively know otherwise. Donna won't let me lift anything heavier than a couple pounds since the doctor mentioned concern over my vertebrae collapsing but other than that, it's business as usual. It's funny, the day to day grind of life helps you take your mind off the long range prognosis of your own mortality.

Maybe that's a blessing. I actually had a breakdown the other night for the very first time other than some silent tears during my second CT scan. The pain had woken me up in the middle of the night, as it most often does, and I again started worrying not about me but Donna and the kids. Somehow Donna woke up, sensing my distress, and comforted me in the ways that only a wife can. I'm forever grateful to my soulmate of 23+ years for the love and courage she provides me each and every day.

The Biopsy

So D-Day came on 11/9 and I reported dutifully to the hospital on time. I had followed directions on not eating or drinking ahead of the procedure and unfortunately this included the pain medicine that I had been prescribed. I waited until almost 11 PM before taking my dose and then tossed and turned throughout the entire night as the pain got worse and worse. By the time I got to the hospital I was easily a 7 and tried to calmly wait through the 2+ hour prep work for the procedure. When I was finally wheeled down to the procedure, I was easily a 9 with no room for small talk from the well meaning nurses. The sedation and local anesthesia certainly helped but I wouldn't be lying if I said that the next 2+ days were miserable as my body recovered from the lack of meds and procedure.

The actual biopsy wasn't that bad if you disregard the needles that I endured for blood tests, IV's and the final big pinch of a needle being driven into my spine as I lain wide awake on the CT table. The nurse reassured me with every "click" as sample after sample of the tumor was taken for lab analysis.

It's strange that the medical team doesn't want to do the cement injection that the oncologist had described just a few days prior. I'm not sure if this is a good thing or a bad think in the long term but am slightly relieved that it's less that I have to endure today. Time will only tell....

Afterwards, I spent about two hours in the hospital room in "recovery" where I devoured the first food and drink I was able to eat in the last 14 hours. It was probably the worst chicken salad sandwich I've ever eaten in my entire lift but I was ridiculously grateful in between gulps of water.

So now my PCP has passed me onto an Oncologist, great fun!

He's reviewed the x-ray, CT scan and MRI and now we meet with him to determine what's going on but he has no answers. He's hoping for "lymphoma" which now we know it's not and then some type of sarcoma or several other diagnosis that require fluency in Latin.

The next course of action is another full body CT scan, with and without contrast so that they could determine if there are any other tumors else where in my body. He had already examined me in great detail, including a brief juggling of Larry and Moe, and was satisfied on first glance I had no other lymph issues.

The actual CT scan was relatively painless other than drinking the horrible contrast fluid and trying to lay still while your back screamed at you in pain. I shed tears for the first time since we've begun this journey, not at my mortality but at the thought of not watching my kids graduate, marry, have kids of their own, etc. There's just something about lying in a sterile metal tube with the rhythmic clicking of machinery in the background that drives you into your own deepest fears.

The follow up CT scan confirms no other tumors elsewhere so it's on to biopsy!

He seems to be a great doctor (I admire him a lot) but thinks we should do a biopsy of the tumors and also inject "cement" in my L4 to stabilize it. I expressed concern over the procedure, like a big chicken, and he asked if I had any better ideas to which I for once was speechless. Yep, I like this guy a lot! We go with his plan instead of mine.

WTF is Going On??

With all the shit going on, I thought maybe I should start a blog and a quick Google search told me I already had, in 2009. Well maybe I can commit to updating it a little more frequently after 8+ years!

So I met with my doctor on 10/11 due to some consistent recurring back pain that just hasn't gone away. I can save you some time and me some troubles by just explaining what was found in what order. An x-ray showed some irregularities that my doctor didn't like so I was off to a CT scan of my back. That came back as "concerning" as well so why not go all in for an MRI of the same area to confirm?

Finally I was told that there was a high probability of cancer and that the best course was meeting with an oncologist.

People ask me if I'm in pain and it honestly depends. My pain comes and goes with a mind of its own. My lower back aches 95% of the time and the first few weeks were miserable as the pain traveled down my right side from my hip to my thigh and even shins. Somehow, don't even ask me how, the pain has moved from my right side to my left side with the same veracity. Even as I type this, my back aches with a dull pain that I can handle but the sharp shooting pain lances down my left side all the way to my shin which aches with a sharpness that can't be described. I assume it's all from something pushing on a stupid nerve somewhere but I really, really wish it would go away.

Yikes!