I didn’t get an update out after my last ( #6 ) infusion – no great loss, there wasn’t too much action missed.
I think we’ve settled into a relatively good routine with the infusions. Denise and I are aware of all of the side effects and when they start kicking in so that we can stay ahead of them for the most part (via medical countermeasures). The flow goes something like:
- Wednesday, infusion day, nausea meds in full force, and cold sensitivity (gloves)
- Thursday, still have infusion pump attached, stomach cramping, nausea meds in full force, and cold sensitivity
- Friday, return infusion pump to hospital in the evening, stomach cramping, nausea meds in full force, cold sensitivity
- Saturday, fuzziness (chemo brain) kicks in
- Sunday, same
- Monday, fuzziness cleared up for the most part, standard nausea issues
- Tuesday, just nausea – and if I stay “ahead” of it with hard candies and medicine, it’s completely manageable
- Wednesday, my platelets are at their lowest today, so very susceptible to infection / etc – by the next Wednesday they should be built back up for another infusion treatment.
- Thursday -> Tuesday, primarily managing nausea and fatigue.
The fatigue is cumulative for sure, week over week my energy levels have definitely decreased significantly. I’ve slowed down to about 1 workout a week at this point on average.
A positive: I’ve steadied my weight loss at this point and have been sustaining a weight of about 75-77 KG. This is still a primary concern of mine, making sure that I get enough nutrition in the ‘ol body. Without working out regularly and the fact that my tastebuds are completely different now make it difficult to ‘remember’ to eat. It seems that unless the food has some significant spice or sweetness to it, I don’t really taste too much.
I received a CT scan here in Dublin Wednesday the 16th and Professor McDermott reviewed it with me; at this time there doesn’t seem to be any concerns! That’s another positive! Denise and I will be heading to Houston in February for followup with Dr. Katz @ MD Anderson where I’ll have another CT scan so they can do a baseline comparison with my CT from MD Anderson post-op (Whipple). This will allow Dr. Katz to exclude healing/scarring tissue and determine if there are any other differences that would be concerning.
In other news, Connor got his first acceptance letter for University. Penn State Pre-Medical acceptance! He’s planning on waiting to see what offers he gets here in Europe (Royal College of Surgeons Ireland is his #1 pick currently).
Riley has been learning guitar (and getting pretty good), she has weekly lessons starting today! For the next two weeks she’ll be completing her “Work Placement” for school, she’s already done one week earlier this year at a local University, shadowing a Professor. The first week she’ll be working at Accenture and the following week she’ll be working at Synchronoss! We’ll put her to work for sure 😉
Once again, thank all of you that contributed to my “Birthday Fundraiser” for MD Anderson. We raised €2,282! That’s awesome; I love all of you!
Peace & Love to all of you wonderful people,Jay, Denise, Connor & Riley