'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.

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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.