To say that things have been rough lately is putting it mildly. If I didn't have work and dogs that need to go out, I'd probably stay in bed all day. I'm sorry for not returning emails and phone calls. I get them and really appreciate the thoughts. Please be patient with me as I try to figure this out.
Last week, I decided to send a note of complaint to NVCI about "a-hole" doctor. You can read about him if you go back to the blog for last September. My sister's in-laws are physicians and always encouraged me to write to the chief of staff when we had a legitimate complaint. In all these years, I only wrote once (besides last week) when there was an issue regarding a surgery Adrienne had when she was 10. I spoke with the chief medical officer for an hour, who it turns out, was a transplant doc at Moffit Cancer Center in Tampa for 16 years, so she was well acquainted with the type of medical issues Adrienne had. I'm so glad we talked. She's going to take some very direct action with the doctor, providing counseling and direction, and patients will now be able to decline to see a doctor when inpatient. She also wants me to participate in some patient advocacy and resident/fellowship training, which I'd like to do. I generally think there's a lack of patient input and understanding on the part of medical professionals and especially oncologists. I'm thinking of doing a talk titled "When you say this, we hear that."
I'm hoping that a few trips in the near future will help: Tucscon for a long weekend, a week in Cabo with the girls, and 2 weeks at the end of July in the Bay Area (some work, some vacation). I always love having visitors here too and we have plenty of room.
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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.
11 comments:
Thank you , even though my son's wife was a third year resident.......she wouldn't speak up ( had to think of her position I suppose) .... and when I did .... I was looked at as though I was from another planet for the most part...and was spoke to like as if I was soemthing on the bottom of their shoe.. ( in my case they didn't want to deal with the mother) it was if I just an irritant..( the nurses though except for one ) were wonderful and patient...( but I go to know them sitting in that folding chair for hours at a time......so thank you for speaking for all of us who are sharing and have shared the dark days and hours.
I think of you even though we have never met.........I thought the holiday of winter would be the hardest but seeing the rebirth of spring has been worse in someways....yours in sisterhood Loraine
I'm sorry you are struggling. Though I believe it is totally reasonable.
I agree that you would be a great advocate and hope that you will continue to pursue this. Please keep us updated.
Love always.
Hi Alison,
I just wanted to say "hi" and that it is really great that you are doing what you are doing. I think your tentative title for the talk sounds perfect. Thank you for being wonderful. <3 Anastasia
I'm so sorry to hear you've had particularly dark days recently, Alison. You've been in my thoughts, and continue to be.
For what it's worth, I'm thrilled at the thought of you being able to share your healthcare experience and expertise with others. Far too often, the Doctor-As-God mentality is accepted. That this is forced upon those who are already tired and stressed and at wits' end is just adding insult to injury, and makes it all the more insidious. Thank you for helping.
Sending lots of love,
Lisa
Alison, just wanted to say that I think of you and Adrienne quite often as I've been at the Hope Lodge... I remember how you used to write about your restaurant/theatre excursions and how much fun you must've had. She was so lucky to have you there with her and able to experience the city with her best friend.
Hoping things get better for you Alison...
Chris
Alison,
Advocacy training sounds like a wonderful opportunity. Medical staff would really benefit from your insight and experience, and hopefully it would help other families as well. I think about you all the time. I'm glad you have some trips planned and hope the change of scenery help. You have an open invitation to visit us in Washington, if ever you are out this way. Sending lots of love, Janet
Continuing to send you strength through this awful time, Alison - but so glad to see a glimmer of that fight coming back. You have so much knowledge and experience of the medical system, you will, if you feel like it and when you feel able, be a wonderful advocate/ campaigner for patients across the U.S.A......but for now, Alison - focus on YOU. Love as always..........Vx
Alison,
Any work that would go to helping patients and their families would be invaluable to so many people. After reading many of your posts on the Hodge board, I used to say to myself, "That woman should write a book." Please do your best to stay strong. Thinking of you often.
Michael
(Herls)
Hi Allison,
Saw Deb B on the trail today. Thinking of you on Mother's Day. Sending lots of love and hugs. Hang in there
love Penny and Andrew
Hi Alison,
I thought about you a lot on Mother's Day. Grief is such a hard and painful process. I have read Adrienne's updates from the beginning and through it all, you always say and explain what is going on so well--whether it is your own feelings, facts or your report on how Adrienne was feeling. Should you ever decide to be a patient advocate, whoever you help would be fortunate.
Thank you for continuing to share what is private and painful.
Take care,
JoAnn
just came across your site and found it quite touching , i wish you well
kevin holyoake
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