Hi Family and Friends!
Yikes, it looks like my plan for a weekly update was quickly pushed to two weeks… and at this rate we’re pushing it to almost a monthly update, which is not okay — so don’t worry, this will not become a habit! Things have just been EXTRA hectic around here (to say the least), so bare with me as I [try to] summarize most of the highlights.
As you can imagine from the details I included in the first update, Dad has needed 24/7 hands-on care from Mom and I — it has been exhausting for each of us, but we keep on keepin’ on! Everyday, it’s about baby steps.
Speaking of baby steps, Dad is able to make a loop around our neighborhood! It is about a 5 minute walk at almost a snails pace but it allows him to get outside, breathe that fresh air, and feel human. It takes energy, so he has had to build up to this accomplishment and we are so proud of him! He absolutely loves to walk, so sometimes we try to go more than once in a day — especially when it’s a beautiful day!
The night before Dad’s first follow-up Doctor’s Appointment (5/23/13) post hospital discharge, he developed what looked to be severe edema in his feet and ankles literally overnight. I was immediately alarmed and wanted to confirm with his Doctor that it wasn’t heart/kidney/liver related and that my Dad wasn’t at risk for a stroke etc. due to all the medication he was taking amongst other reasons. His Oncologist said not to worry as edema is common in Dad’s circumstance… so in addition to magnesium (500mg 2x day) and raising the legs as often as possible, walking is told to also improve circulation.
I previously shared that my Dad’s pain management was exclusively an extended and rapid release narcotic (MS-Contin; a.k.a. morphine). When he left the hospital on 5/15/13 his dosage was 30mg every 8 hours, which was entirely too much for him. We reduced his intake to 30mg every 12 hours, with one to two 15mg rapid release break throughs depending on the day he was having. So, he went from 90mg of morphine in a 24 hour period, to around 75mg depending on the day.
I am THRILLED to share with you that nearly 3 weeks later my Dad was able to successfully decrease his intake to 15mg every 12 hours (30mg total within a 24 hour period), and we have officially begun his “Taper Schedule” — with a seal of approval from his Oncologist of course.
Today we have been experimenting. I removed his scheduled 9:30AM 15mg extended release (E.R.) entirely and I cut the 15mg rapid release (R.R.) into eighths, which translates to 1.875mg each. I gave him 1/8th at 9:30AM and wasn’t impressed with the results (demonstrated too much of a sedation effect) so I’ve completely modified my projected schedule and have been winging it all day since he’s been relatively “pain-free” with various spikes that we were able to be managed by a new and improved method.
You’re probably wondering, “How is this even possible?!” My Dad has literally been in severe chronic abdominal pain since March 2013 — and he still is, but his pain is being managed in an extremely better way now.
Remember in my first update I shared that my Dad was leaning toward medicinal cannabis? This is because he would prefer to NOT be on any opioids, if at all possible. His Oncologist was completely supportive of this decision and my Dad was able to obtain a Medical Marijuana Card because it is legal here in Washington State! Since he began the medicinal cannabis he has been able to eliminate more than half of his laundry list of medications he otherwise needed to consume prior to.
I’m going to have to dedicate an entire email/post to this topic so I won’t be going into detail about it now — but I sincerely look forward to sharing how it was introduced to my Dad, all the options he has, what he seems to favor, what works best for him — and more importantly — how mind-blowing effective it is! Also, as a side note, what is also mind-blowing [to me], is how many unexpecting white-collar individuals who either grow his or her own or know someone/people(!) who do. Who knew!? 😉
Also, when you have 15 minutes PLEASE watch this video about Green Leaf Therapy: click here.
Remember the major insomnia my Dad was experiencing and how I had high hopes to report drastic sleep improvement in my next update? Well… I am happy to report that with the significant decrease of morphine in his system and subsidizing with cannabis indica (lower THC, higher CBD/CBN) my Dad has been able to improve his sleep! He still gets up throughout the night, sometimes more or less than other nights, but for the most part his quality of sleep has greatly improved since our last update! He used to come out to the living room through out the night and experienced what I call “the yips” when dozing/napping/sleeping — he would wake up abruptly and sometimes get up in a panic. Thank God that has decreased, my poor Dad!
Dad had another Doctor’s Appointment last Thursday (6/13/13) and his blood tests were relatively good. His bilirubin continued to drop since our last update and is now at 0.6 mg/dL (range is 0.2 – 1.2) so he is mechanically running at optimal performance with those stents. Further confirmation that the ERCP procedure was in fact a success at this point is that his Amylase Level is 59 U/L (range is 25-125) and his Lipase Level is 27 U/L (range is 8-78). Currently his White & Red Blood Cell Counts are within range, however; I would like to see those numbers increase, particularly with his chemo treatment on the horizon. The only test we are currently waiting on is the Tumor Marker, and in Dad’s case it is called Chromogranin A (opposed to CA19.9). That test is a “send out” so it takes about 1-3 weeks to get the results. The purpose of this test is to monitor the tumor activity. When I get the results, I’ll go into more detail. Overall, Dad’s Oncologist was once again pleased with his blood results.
However, much to our surprise, during Dad’s routine vital check pre-consult his Blood Pressure was 70/47! To our knowledge it has NEVER been that low and was legitimately alarming. It may or may not have had to do with Dad’s hypoglycemia and the fact that his blood sugar levels crashed around that time, but nonetheless after our consult they kept him for almost two hours for a 1-liter bag of IV-fluids. He was dehydrated and the liter bag would only help so it was worth it.
Dad’s Oncologist decided to push back the outpatient chemotherapy treatment schedule to monitor his blood pressure. Since 6/13/13, Mom and I have been noting Dad’s BP sporadically throughout the day, everyday, and will report back to the Doctor in a week or two. The Doctor will then determine whether Dad needs to be put on a prescription to increase his BP or not. Personally, I think it is directly correlated to the morphine and that we’ll see improvement as it continues to leave his system.
This unexpected delay in beginning the chemo treatment also allows more time for Dad to gain weight. On 5/23/13 the Doctor’s scale recorded Dad at 146lbs, and on 6/13/13, he weighed the same. This was “good” news because he didn’t lose any weight; however, Dad desperately needs to gain weight. His Doctor heavily emphasized the need to eat or drink every 30-60 minutes, which has really been a challenge, but Dad has definitely improved on his overall food/drink intake since the last update. I hope to report even more positive progress in our next update as well as discuss his restricted “stent diet” in more detail.
Dad is slowly [re]gaining strength in his voice, usually for a limited time, but we are hoping his fatigue, which could be related to his low BP, will continue to diminish as we move forward with the Morphine Taper Schedule. He has been able to stay awake during the day longer than before — he still naps a lot and wakes himself up talking in his sleep (his mind is ALWAYS going!), but again, this will no doubt subside as the morphine officially leaves his system. He has been through so much, and there are so many praises to be thankful for!
He’s still not ready for visitors, but he wants each of you to know he absolutely appreciates the outpour of love, prayers, support, and positivity. He is determined to fight this and has not given up AT ALL. He is eager to “get his life back” and often pushes himself too much. The will in this man is commendable. He is such an inspiration!
I think that’s it for now! As thorough as I’d like to be, it’s inevitable I have forgot to mention this, that, or the other! In another post/email I plan on sharing my second experience at the PANCAN Educational Seminar (which was held here in Seattle on June 7th, 2013), and will include actual recordings of at least two of the phenomenal and very informative speakers — one of whom is actually my Dad’s Oncologist!! This piece is intended to not only bring more awareness to Pancreatic Cancer, but also shed light on the breaking discoveries as well.
And last but certainly not least –> THANK YOU for your patience as I realize I STILL haven’t responded to initial emails from the first update on June 1st. I know you all understand — or at least I hope you do! Please know that I WILL respond! 🙂
Also, THANK YOU, to each of you who have sent in donations for my Dad and his fight for his life against Pancreatic Cancer — there truly are no words to express how thankful we are! We are so humbled and filled with gratitude. Every little bit helps, especially with Mom’s Cobra Insurance expiring and she was denied an extension. 😦
Feel free to forward this information to let friends and family know, and moreover, please keep my Dad in your prayers…they are working!! If you prefer to pray specific prayers we’re praying his low blood pressure improves naturally, that his overall nutrition and weight improves greatly, and that this Morphine Taper is concluded a complete success!
And if you can…
Thank you & God Bless,
Jenn & Family
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PS: Who’s this stud?!
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