This is a question we think about often. Is it that her disease is manageable or is that she’s had the best medical treatment available, that there’s always been something when she needed it, and thankfully has responded? I think it’s a combination of the two. Sadly, some people have disease that is so aggressive that nothing will help, but more often, getting the best does make a difference. Last December, Adrienne was as close to death as she’s ever been and now, and yes, she's stressed and tired, but she's living life.
The following was written by a woman named Betsy de Parry who had Non-Hodgkin’s Lymphoma (see http://www.lymphomabook.com/).
In the case of lymphoma, there are numerous philosophies on how to treat it, and what one doctor suggests does not mean another doctor whose opinion differs is wrong. It simply means that patients have to do their own homework. We have to remember that we are “purchasing” medical services, even if our insurance companies are footing the bills. So let’s look at how most of us make purchases: we shop and compare to find the best value for our money. Few of us buy the first car we look at and we don’t think twice about the telling the salesman, “We’ll think about it,” before leaving the showroom. Even fewer of us marries the first person we date! Why, then, do many of us accept treatment plans without shopping and comparing? What could be more important than shopping for the best treatment when our very lives are at stake?
While not always curable, Hodgkin's can be a manageable disease, but you have to be your own advocate. You have to find the best that's out there at any particular time. You have to be willing to travel. You have to be vigilant about each and every symptom. You need to have hope.
Adrienne felt pretty lousy from the chemo and it was hard for her to fly back on Sunday evening, but she's feeling better now. She even gained a few pounds over the last month. The plan now is to do one more cycle in March and then do another scan. If the scan is stable, she'll take a break. If there's more improvement, she'll get two more cycles. She'd like more certainty about next steps but this is the way it goes for us.
Subscribe to:
Post Comments (Atom)
6 comments:
Sorry to hear that the chemo was hard on Adrienne.....but it must soften the blow to know how far she has come since December.
Your message in this entry is so important. Unfortunately, in the UK, we are the worst for this - very few seek a second opinion and if you do ask the powers that be make it quite difficult - unless you have private health care!
Here's to a positive time ahead of you all - weight gain, graduation and feeling good :0)........Vx
My fingers are crossed for some more improvement! I also agree about being your own advocate with cancer, I wish more people would get 2nd opinions and not always take the first answer...
Give Adrienne a hug from me!
XO
It is so nice to hear that Adrienne is living her life and doing so well. Love & Hugs to you both. Maureen
Hi my friends...glad that Adrienne is perking up after the last round...and gaining some weight too. Hoping and praying that progress will keep being made in all areas. ((HUGS))
Good post Alison. One key point that you didn't mention is the need for a team approach. Every type of treatment for relapsed/refactory Hodgkins is tough in some way (making decisions, finding the best medical team, funding it, actual support) and requires someone to be an advocate, caregiver, banker(!), coordinator.
Certainly a key reason that Adrienne is still here is that she has you on her side.
"Vigilant about every symptom" - more excellent advice. While in our circle there are way too many people with relapsed/refractory Hodgkins, it is a actually a very small pool of people worldwide. The treatment is all pretty experimental and there is no list of 'what to expect'. Identifying and communicating symptoms quickly can be a lifesaver.
Hope you're feeling better Adrienne.
Kathy
I agree. Excellent post about the power of self-advocacy. We, patients and care givers, need to be our best friends.
Congratulations too of course to you and Adrienne on the outstanding news about her scans! Close to remission! FANTASTIC! I know the past few months have been tough, but Adrienne's grace and strength along with the expertise of the great Dr. O have done immeasurable good. You two are amazing.
Wishing Adrienne continued strength and positive news! Love to you always.
Post a Comment