Another disaster at chemo to avoid a 12 hour day to UCLA

The big question remains: is it better to drive to Hoag and face chemo calamity or spend 12 hours at UCLA? Time seems to be what I seek, so I choose Hoag. Here we go, the first calamity, the chemo calendar frenzy (no nurse seems to understand weekly chemo! weekly=weekly) and the day 1, day 8, day 15, which cycle questioning begins. Then, the second debate which is an increased dosage that not one doc tells me about. It all seems logical, so I stop questioning the 5mg difference and hope it is fine. The third calamity begins with a stab (literally) to the chest in my port which I have never ever had pain when the “hook up” begins. Something has got to be wrong. My eyes water as I try to ignore the horrible pain. After no blood return occurs, she decides to pull it out (ouch) and try again. This saga puts me at 2 hours so far behind my starting schedule. Still no blood return. Never had this happen and I am told it can happen and my port could need a “draino” process, but that requires a doctor order which I don’t have and also requires another hour. We cannot start chemo unless we get a CBC to verify my counts. I give in after much debate of whether I want more pain or just wait more time to get blood return. I take the pain route since time seems to be too precious. My CBC seems to take longer than normal. It comes back after one week skipping chemo with less than desirable results, but good enough to get chemo. After verifying once with local doc, twice with nurse about my pre-meds, the pre-meds were brought to me wrong. I don’t know who wasn’t listening to who or what happened. Let’s start again with the only 2 pre-meds I take. (this was determined to cut more time by me taking the pills instead of infusion) Nurse brings 25 mg of Benadryl which she says they “push” directly into the line. WHAT? That method of madness is not for me. At UCLA, it gets infused and diluted. Even then, I am unable to see straight. They may have their method, but I fear vomit or some additional crisis. After much debate, nurse agrees to infuse it with some dilution. I pass out after this, but only to be monitored every 15 minutes attached to a BP machine. Whatever?! I start calculating my arrival home and thankful that I will see Alex before bed time. I wonder with the series of calamities about the patients who put their lives in the hands of the “experts”. Bye, bye, patients! If I have learned anything, it is never to be afraid to ask questions since humans are involved and humans can make mistakes.

On the other hand, the pursuit of getting compassionate use for the immunotherapy drug seems like a dog chasing it’s tail routine. Bottom line is that drug companies are forced to avoid compassionate use since FDA is involved and one person getting the drug outside of normal routine would force the pharmaceutical company to report this both good and bad. This would skew the results and cause the drug to not come to market or cause delay. So, we presented my situation once again to someone who doesn’t really understand first hand to see if there are any answers. We are not at the point of flying to India or China or Europe. It seems strange that this would be my only option. I will pray and hope that the immunotherapy will come to Cedars and UCLA sooner rather than later. This would give me the chance to enroll in normal phase 1 trial. I was told Nov, then Dec, now Jan. Hoping and praying that there is no more delay. I still must focus on the here and now. This is difficult, but made much easier with less time living in the toilet. Having conversations with a door between you and your child, I am finding a lot lost in translation or limited conversations with short answers. I decide to take control of what I can and try to focus less on what limited control I have in the course of the disease. I also decide to focus on my good moments and trying to do anything fun in the few moments. This is as simple as hearing Alex tell us about his tutoring or his search for his teacher’s purse which he found in the teacher’s lounge. I know many of you are on Thanksgiving, Hanukkah, Christmas and the frenzy of all you have to do. I encourage you all to take a moment to enjoy the simple things and remember what you enjoy about the holidays. Is it your egg nog latte? Baking cookies? Hanging with friends? Decorating your house? your tree? Whatever it is, cease the moment and try less to get caught up with the craziness. It isn’t worth it. Enjoy this time!

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