Time flies when your having "FUN". My late October entry...
It really takes some serious discipline to stay up to date here, but I will definitely get better at updating my progress. Honestly, I have lacked the overall motivation. As each day goes by, everything starts feeling very routine, but it shouldn't. My days are filled with constant discussions on where my health is and where we want it to go. I have said it before, it is really a roller coaster ride. I have my good days and my bad days. As long as there is good days, it gives me hope and inspiration.
Most importantly, I have been blessed with such an incredible support system. My wife, Lori, does WAY too much for me. She would probably argue that; however, she is driving the ship (as she would say) and I am just a passenger. If it wasn't for her, I would be at a loss. Although she hates the name "Caregiver", I want to emphasize the importance of having someone in your corner that is willing and able to be an advocate for you.
Here are the many things my Caregiver does for me (whether I like it or not):
- She makes sure I am taking ALL of my medication. I take upwards of 10-12 meds and multiple shots per day. It doesn't take much to miss one.
- She drives me everywhere. Do I need her too, no, but who am I to complain.
- She schedules all of my Doctor/Hospital appointments
- She picks up and reorders all my medications
- She maintains a list of questions for doctor
- She handles insurance EOB's and any issues
- She manages my social calendar (all though there isn't much of one)
- She rubs oils and holy water on my chest to remind the higher power that I am fighting.
- She makes sure I am smoking cannabis, when I need it. Sounds strange but I tend to avoid it when I shouldn't.
- She remains 100% positive ALL the time, when I need it or don't need it.
- She listens to me when I explain how I am feeling
- She stares at me while I'm sleeping. Ok that one is a little creepy, but its how much she cares.
- She is my bouncer. When I can't deal with something or someone she steps in.
- She helps me envision a future
- She cooks me anything I want (all the time)
- She sanitizes the entire house everyday at 5am to make sure I don't get sick
- She still laughs and loves even with the weight of the world on her shoulders
- She cries with me when sadness is the only way to cope.
- She reminds me to focus on the small things
- She walks along side of me through the most difficult time of my life
Most Importantly: She has an unconditional love for me that I will cherish forever. My "Caregiver" is my partner. I can only hope and pray that anyone going through this has the same loving support, when needed.
I also want to thank EVERYONE that continues to support us together through this journey!!
It was a busy month.
Since my last post, I have had 3 more treatments (#5 ,#6, #7) and have seen some major improvement of my CA 19-9 numbers. I have discussed the CA 19-9 numbers in other journal entries; however, to date I have gone from CA 19-9 of 250,000 to 30,900 which is great and consistent progress. Remember, I need to get these numbers to normal range which is under 40.
Otherwise, the side affects are the same. I have gotten way more sensitive to cold due to the neuropathy. It’s lasting longer and longer now. It starts each morning when I wake up and lasts throughout the day. The pain is starting to last around 7-8 days after treatment. To combat it, I am wearing gloves and beanies inside or out. It makes eating a challenge, but the alternative is a heavy stinging in my fingers and feet.
One change we made was incorporating the cannabis into treatment day. Before starting chemo now, I take a few of my homemade gummies. It takes about 2 hours to kick in which perfectly aligns with the 2nd phase of treatment, which normally I hate. The gummies help me sleep through the almost the entire session. In fact, this last session I did sleep straight through the entire treatment.
Back To Work
I started back to work on 9/30 after 8 weeks of Short Term Disability. It was so important to get those 8 weeks to help settle in to my new norm. It was difficult to imagine my ability to get back to work. After awhile, I was finding myself spending way to much time thinking about "what ifs" and "why me" that I needed to get my mind off of my condition and start looking for positives on a daily basis. Getting back to work was more for my emotional state than for any other reason.
My employer has been overly supportive of my situation and have made accommodations for me to fit my schedule. I am so fortunate to be able to work full-time from home. I have temporarily grounded myself from traveling, which was a weekly occurrence for me before.
Work has been a great diversion. I have found that I am more focused and able to provide positive results simply because I have a slightly different outlook. I see things differently than I did before which has helped me state of mind.
Parents Weekend in Connecticut
We took a trip to New Hamden to visit my daughter at college for parents weekend. We stayed at the WatersEdge resort on the water in Westbrook, CT.
We had a really nice time, just getting away with the family and enjoying a little R & R.
All in all the month of October, came and went quickly. Now, as we head into Fall/Winter I remain as focused as I can on improving my health. I really do not want to be a statistic and am doing all I can to change the conversation around Pancreatic Cancer. This disease takes on many shapes and size, but I am encouraged by the medical communities advancements in molecular and genetic testing that we all have a chance. So, for now I will head my doctors' recommendation to "remain on this earth until a cure is found"
Thanks for listening!!