Adrienne got home late on Wednesday night after missing her plane on Wednesday morning and spending the day at JFK Airport. Ugh! Then we flew to California on Thursday and spent Friday at City of Hope. Her counts were good enough for chemo but no one got insurance approval in advance. It was news to me that insurance pre-approval was required and apparently this is something new. It seems odd to me that approval is necessary since this obviously isn't elective.
I think half the staff at COH got involved and eventually things were resolved, but it meant chemo started about two hours late making for a very long day. So far, Adrienne isn't feeling too bad and even ate dinner last night. One of the chemos, oxaliplatin, causes a type of acute neuropathy so Adrienne can't eat or touch anything really cold or hot for 3 days. Her tongue "cramped up" last night but it was more of an annoyance than a problem.
Another issue is neupogen shots. Apparently we have to mail order those and can't get them at the pharmacy so Adrienne won't get her shot today. We'll just hope that her counts hold up so she doesn't get sick and can get her chemo on January 4. With the holiday, I expect it will be late next week until I can get the shots.
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Adrienne was diagnosed with Hodgkin's Disease in 1996 at age 9. She had multiple relapses, two bone marrow transplants, and a range of chemos and radiation therapies, and passed away on October 1, 2009. We are heartbroken.
Out with the Girls
About Adrienne
- Adrienne
- Adrienne was very much like others with Hodgkin's Lymphoma, the most common cancer in teens and young adults. What was unusual is that she had it for more than half her life and ultimately, it took her life. Hodgkin's is curable for about 80% people, but Adrienne was one of the 20% for whom a cure was elusive. She considered herself lucky since treatments had been there for her with each relapse but she ran out of treatment options and her body just couldn’t take any more. As she said, "Though I’ve now had cancer for most of my life, I no longer plan my life around it; instead, I try to plan cancer around my life." We hope you can take inspiration from her and how she lived her life.
1 comment:
It seems too weird to congratulate anyone on getting started with chemo . . . so let me just say that I hope all these insurance and scheduling snafus are now over so you can concentrate on accomplishing your goal of getting better. Mail order neupogen? It doesn't seem like the medical powers that be are making ANYTHING easy for you right now.
I hope your family can enjoy the holiday break together with Adrienne feeling well. My family's best to all of you this season, and always.
Karen, Clare's mom
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