Archive for November, 2013

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

November 15, 2013

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!


Can’t get off the pot…

November 2, 2013
Monday: Literally. The reality that the roller coaster ride has not stopped since Alex started school has put me into a funk that I cannot seem to escape. I tell myself the worry does not help me to be present, but that only last a minute. I feel the pressure of what awaits as I will do battle today to get the chemo scheduled that I need. The follow up, the calls, the fake tears, the demand to get what I need only causes more unwanted stress. The message boards are filled with those who have lost hope as the options become fewer. This is my reality, but I choose to ignore this one. At chemo on Friday one of my nurses who used to work as a clinical trial nurse tells us to begin compassionate use plea for PD1 trial (the immunotherapy). Does she know something that I choose to ignore? Is she trying to be helpful? I am not that Austin patient who got media attention. I am not an attorney and do not have resources. That challenge seems too much to face at this moment when just scheduling my chemo locally will prove to be a challenge in itself. I have run through 3 options in weeks that did not work. Now this last option seems to have run out of my control with side effects which prevent me to leave the pot. My UCLA nurses gave me pep talks and told me I am just facing another bump which I will tackle like all the rest. My doc must have felt my vibes too since he sat with me a little longer than normal just checking on me. This time he is making the jokes about my never ending supply of Imodium. My Halloween decorations remain in a box and Alex hasn’t noticed. While I love Halloween, it seems like I will miss it this year. I am so thankful for a friend who sewed Alex’s dream costume since his focus seems to be all about that.   So while I love seeing all the Halloween photos, I have a tinge of envy this year and a desire for normalcy. This desire causes me to remain on the pity pot too long. How I wish I had my weekend full of freedom from my cancer job instead of this feeling of dread. I found joy in the few moments I had walking with Jim, but then the reality hits me smack in the face once again. Small things turn into big things as my patience is lost and the list of normal things to do remains full with no items crossed off. All items can wait as they are things which I normally put off. Frustration continues and fatigue is ever present. I attempt to daydream about future vacations, but it seems so far off. Is this feeling causing Alex to focus more on his spreadsheet of vacations for the summer? Is he needing an escape as much as I am? More sleepless nights for our family continue.
Monday continues:
The local doctor who could easily arrange for chemo at Hoag on weds refuses due to her 7 day between each chemo rule. She refuses to acknowledge my low dose, my blood counts are great, and my one desire to have quality of life. She refuses to budge and think outside the box. There is zero flexibility as I become increasingly frustrated and sob uncontrollably of the illogical conclusion she has made. My drug dose on Friday was 15 mg, normal dose is 300 mg. She does not care and her nurse tells me not once, but twice that I am not a priority. This only shakes me with a reality that I cannot believe to be true. So, a patient getting an annual recheck to ensure that he/she has no cancer after a year of freedom has priority. What am I thinking? This doc would rather have a patient die then break her rules. An ignorant patient would comply while his cancer grows and his days numbered. Are there many of these types of oncologists out there. Unfortunately across America and the world, the message boards indicate that this is the case. As oncology moves forward with more and more patients of all ages especially younger ones, the need for thinking outside the box becomes greater. These docs cannot keep up. These are the ones telling their patient they cannot take a supplement that is based on a food because it would interfere with the chemo. Unless it is grapefruit then this is like telling a patient they cannot eat food. Why in Japan is most oncology integrative research based on mushrooms? I was so upset by the conversation that I phone UCLA sobbing and the office staff were so surprised to hear my beaten up voice, that she immediately pushed me in the full schedule for weds without escalation. She offered her help and reached out asking if there was anything she could do. Two minutes later, my doc calls since I had left him a message. All I heard him say is, ” no more tears.” My chemo is scheduled for Weds. My tears would not stop. The frustration, the anger, the envy, the jealousy, the lack of control, the deep sadness is all too much for me, so the tears continue.
It takes everything for me to get into the car to pick up Alex and put on a happy face. Unfortunately, the tween frustration seeps into my car and we are surrounded by the fog of frustration without a window of positivity in sight. We go to the therapist. Alex expresses his tween frustration, mostly kids being stupid and insensitive, but there are the normal concerns of how to fit in with a balance that Alex seeks. If I knew these parents, I would beg them to parent their kids to stop being so insensitive to others and take an active role in their child’s life. I know this would be horrifying to Alex, so I keep this thought to myself. For the most part, he has confronted some of these kids who send ridiculous emails that deserve no response. I am proud that Alex takes the high road, but as he says it isnt easy as it is the same kids in most of his classes. The circles are tight and it is too difficult to reach outside of the circle. At least with boys, it seems easier. They repair and move on instead of the dragging on day after day. Alex’s eyes fill with tears for his worries are my own. My pity potty party has caused him this insecurity as he asks me, “are you not going to keep fighting? Are you giving up?” Lucky for the therapist who puts things simply explains this is just mom having a bad day. Alex could not recall a day when I was like this. Jim couldn’t either. They are both puzzled by my continual tears. I know they will eventually stop, but not today. I continue to cry without notice because the thoughts race in my head from no control, few options, the reality, the lack of freedom, the lack of ability to do what I enjoy most, just being me. The strange rhythm of the treatment is gone. The answers are few.
Weds. Chemo day:
I was nauseous to begin the day, so I knew it was more my nerves and memory playing games with me. I drugged up, but was armed with the usual treats. I have now come to realize that the treats are more than simply yummy snacks. The treats represent hope, a positive memory, a smile, happiness, a surprise to a crazy day, and a conversation starter. I look around and see happy bald faces consuming treats that provide a happy memory because I know that they cannot taste them. I made some new friends who talked about the struggle to gain weight. I gave my usual speech on eating anything you want and they confessed their concern for the tales of what you should and should not eat. Then, since the infusion was so long, there were multiple visits from my doctor. His eyes were concerned, but he didn’t know what to say to me just like Jim and Alex couldn’t find the words to comfort me. My many nurses checked on me. I decided since I was so drugged to put on my headphones and listen to music. During one of my naps, I felt like someone was standing over me. My nurse who has a son Alex’s age was standing over me smiling. She said, “good news, your tumor marker is down 4 points.” I talked to Margie’s doctor who encouraged me to stop the diarrhea. He even made a comment unlike him to say that we could hope for even better than stable disease. I learned from another nurse that he had lost a dozen patients since Margie who were his long term patients. They felt this explained his visit to me as I am approaching year 4. My doc was cautiously optimistic responding with his usual, “good, good.” We learned some more info about the PD1 trial upcoming is through Merck. Jim obtained a case number for Genentech for compassionate use, but my doc explained that they can re-open a close trial in certain cases. More things to follow up on ideas for tomorrow. Until then, I await my mom’s visit and will make every effort to stop living on the pot in more ways than one. I hate missing holidays and fun, but I am reminded that I should be happy with being here, alive and thankful to be coping as well as I am. Tomorrow is a new day.