May 29, 2013 - 8:42 pm
3 days to go before I change to post-treatment status. It's been quite a journey with some bumpy road still to come but I have my next milestone set a month out where I hope to see most of the dusty road in the rear view mirror.
Most days on my blog I report out various factors being currently or recently been managed. The percent is amount of focus or intensity of the issue. Here is today's log entry:
No active management (i.e. - nothing to do)
Side effect with low to no impact currently
Treatment for each actively managed side effect:
Tongue Pain - tongue inflammation and ulcers - These cause the greatest pain and focus now. Being on MS Contin (Morphine Sulfate ER) 30mg/8 hours, this manages the general pain in the head/neck area. It does little for the pain emanating from the tongue. Just using topicals like lidocaine, Magic Mouthwash (Benydril/anti-inflammatory, Maalox/antiacid, carafate/sucralfate) and Triamcin/Triamcinolone Aceteonide dental paste (corticosteroid for mouth sores) to keep the breakthrough pain in check. Taking hydrocodone 5-500 for the breakthrough pain also helps. Salt/Baking soda washing via swish and waterpik to keep area clean and clear and cuts the pain.
Back of Throat/Tongue Pain - This pain is more general and seems to be under control through the MS Contin ER. Salt/Baking soda washing via swish and waterpik to keep area clean and clear and cuts the pain.
Difficulty Swallowing - This condition is a combination of the first two and general for anyone undergoing HNC radiotherapy. The pain is general in nature and managed well adequately through the MS Contin ER. Salt/Baking soda washing via swish and waterpik to keep area clean and clear and cuts the pain.
Neck Burn - A large section of neck is showing like bad peeling sunburn including areas where peeling exposes sensitive skin. This area of the neck is likely generating more pain than what I feel so aided by management through the MS Contin ER. Acquaphor is applied generously to the peeled areas and this minimizes the pain in these areas. A lighter coating of Acquaphor covers the dead yet unpeeled areas. Silver silvadene on standby if the wounds become "wet".
Nutrition - Weight Loss
From the peak weight of 178 at start of rads (also peak during the past six months) to present at 161, weight has dropped less than 17 pounds (<10%). Quite pleased with this and actively managing via consumption of various protein shakes and drinks, along with soft solids and ground up solid food using baby food grinder. The goal is to hold around 150-155 during next couple weeks then maybe take it a bit lower or start rebuildng from there; depends mostly on strength I have in reserve for rebuilding core rather than using that energy to deal with more basic tissue rebuilding which would take priority.
I've been able to manage my caloric intake such that I feel increasingly confident that I can glide through the next few weeks without the need for a PEG. I started out undecided, then pro PEG early, then switched hard to no-PEG once fully informed on all the factors. There were emotional elements involved for sure but the analysis and decision process was fact driven.
Taking the amount of primary fluids such as plain and protein fortified milk and a Boost now and then and some juices I've be consuming and adding to the high liquid content of the protein shakes and smoothies, and get the bulk of what I need to keep my hydration up. I do get saline hydration each week during my weekly infusion of carboplatin; that will be stopping now that chemo is done. I also go in for an additional saline infusion once a week, just as an insurance against becoming dehydrated. Early on during the induction chemo rounds I got hit twice with dehydration and that is an experience I know and do NOT want to repeat. So being prone to dehydration incents me to be extra alert about staying hydrated all the time. Will speak with MO this Friday about how to manage hydration going into post-tx phase.
Here are a few key images showing the condition of the interior of my mouth and tongue and neck. You can see why the focus is on the pain in the tongue. ouchie!
Plans for the next phase
Going into the post treatment phase is not a cakewalk I fully understand and even today need to make conscious reference to the fact that being done with concurrent CRT chemoradiotherapy does not mean things are going to start mending in short order. Personally, I have charted the condition curve such that looking three weeks forward is where I am presently; allowing for further dip in condition and recovery to present during this three weeks. How did I plot that curve? Just feels right given the ground I have covered and the sense I have of my body and response to each side effect it has had to face and cope with these past 6 months.
That pretty sums up where things stand today and my take on things for the next several weeks. Beyond that, all I can hope is a faster rate of recovery and one with the fewest new side effects but what that really looks like is far too opaque to map out, especially with still too many unforeseen side effects that can set course direction askew. I can say I will stay true to my principles and convictions to apply all my energy to get healed as fast as possible and in the best of spirits.
Thanks to all here who have been so generous in sharing your experiences and knowledge. I know I will fall short of offering back as much as I have received but will do my best to do so. Thanks again. Don