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M&M: Wendy O’Neil and Debra LaFrankie

Aug 22, 2012|

Wendy O’Neil and her nurse, Debra LaFrankie, stop by to talk with Mike and Steve about the grueling clinical trial that Wendy went through to fight Glioblastoma. Debra touches on how tough and strong a patient Wendy has been and the challenges her patients experience while Wendy describes how big a blessing having Dana-Farber in her life has been and is enjoying being able to spend more time with her family in her new home.

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Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

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My husband travels a lot so it's just she and I and we just finished dinner and ice data to have this. Numbing feeling come over my right side and my hand started to tremble and I thought. What is going on and I didn't want my daughter to know what was happening to me. And I just froze for a moment and in it. Went away like twenty seconds but knows an awful long twenty seconds and I thought in my have a stroke. And yeah. That of that evening nothing else happened and it didn't happen again for quite some time. And then finally when it did start happening again I decided to have it checked out so they started doing tests and determined that my carotid arteries were blocked so I wasn't having a stroke. And then they I was sent to a neurologist and all in this time my father was sick and he passed away and since then and I had my MRI and some other tasks and went on vacation. And came back and to get the results of my MRI and there was a brain tumor. Com panic ensued. I broke down my poor neurologists have held me to do what as I cried. But. After I got out to my -- to those all I was at my doctors that office the neurologist. -- heat. I east comforted me and I went out to my car and called my husband. And said Tony not to believe this. But I have a brain tumor. He's like why. So and I don't remember anything after that until I picked up my daughter. DM so it was a driving to her dance studio and as my. The family practitioner called me and said what you -- told Tommy my daughter's -- storming. Listen I don't know doctor Harvey. But. I I don't know he says well we'll get through this we'll get through this. I then. SR a surgeon and neurosurgeon and Portland -- our own doctor decide and heat we had. The tumor removed and he did an awesome job. However I did lose all use of my right side for a short time he came back very quickly and I've got probably 95% of it. Back and I might have a little trouble still include my right foot and went through six weeks of radiation. And well before that I came down here to the Dana Farber to beat it to for a second opinion. And decided this is the place to be and it truly is the place to be. They did. So much for me but I had six weeks of radiation and a home in Maine because there's a sense really in me coming down here for radiation. Because they wouldn't on the same thing down years they would do for me main. And then I came down here for the chemo. And clinical trial and that was thirteen months. I didn't have it as bad as some people but we've seen more as a pleasant. Your -- your Debra every got a strong patients over I don't clearly do. It's amazing when you hear that story here telling that story what goes through your mind. Well how much -- pleasure it is to see how well Wendy is today because that isn't always have come. But it also makes me a little sad because I've known her so long now that I forget how difficult and challenging let's -- the very beginning how long she must have felt. And until that she's here and I think that she's doing amazingly well and tangled keep them away to which Europe allowing you to know each other enough. -- two years two years since that differs consoles here. We -- a lot -- -- doctors in the researches and so forth but people in your capacity what kind of relationship he generally have a patient's. We have a primary Anderson not only to make his hugely important because -- that the patient knows when a common symptom or concern or question they know exactly who is Amanda found. Likewise we begin to understand what's really important for that individual patient because everybody is different and you know. Everybody's individual response and feeling and side effects their own so it helps us to know each other very well so that I can tell -- by the tone -- voice how concerned she is nice something if she's content to talk to me about it. We patients you deal with. Many many I probably have over a hundred primary patients not all of which -- on treatment presently as Wendy Wendy -- patient that she's not on treatments and. That has to be difficult balancing act because you need to talents and skills and indeed the interest to -- to forge this kind of relationships so that when she calls. It's not. Like she's just being referred to -- talk to as a stranger -- Well -- that's part of the blessing that I think Dana Farber is writing and very well I keep hearing about US has been a nurse at Dana forever for 24 years and I think it's very much her style. Have you know personalized relationships. Everybody there I've heard it all day on on this show listening on my way and everybody there is they're committed to making. Care and life better for people who are battling cancer. So to me it's a pleasure and when people say well we must be hard job howdy do and it's because they get to -- terrific people like Wendy and some of the Jimmy Fund heroes that I. You have the pleasure of meeting and I -- team walks free -- so it's really it's wonderful and that's a good balance for us. Deborah Wendy was dealing with a brain tumor you're the co leader of the brain tumor support group and a I'm curious. He he's here when he talked about a whole right side going numb -- affects the sort of neural neurological aspect of it. What type of an issue easier -- your patience dealing with me talk about motor skills in the brain and brain tumors. The eight is the invisible challenges and I think it even harder and physical weakness is certainly a challenge and it it does cause debilitating changes for a lot of people. Albeit temporary Wendy's case once information. Results she actually regained most of her strength. Potential location of the -- people can have speech impairment memory impairment. Cognition and difficulty thinking and processing being able to do simple task so they're very easy for assault daily. So it really is difficult. You said a thirteen month. Clinical trial that seems like a long stretch can you tell us what that was like. Grueling. But I got through it and like I said before and there are many other people to have that much worse than I had it. It was five day. -- -- The normal course of treatment would just seminar. And then I had seven days of the clinical trial period -- clinical trial. Drug at the same time and then a week off and then another seven days of the clinical trial. Drug and then a week off. And then it was a 28 day program so it. You know those twenty days -- over writes down all over again and as long as my accounts were okay my blood counts. And there are few times slipped. I have to like three treatments three rounds and I'd have to take a week off. And actually those one time where I had to take two weeks off which. It's nice to have the break but it prolong -- the whole process. Be it. So I was glad to have that don't know who was there when you know you -- -- -- -- gains in the modulate the general the main. Very well very very good and spend a lot of time in my daughter now more than I ever did did she go -- the only Aston she's she's twelve. Oh I thought we're talking about a go okay well no and we haven't grown daughter to my husband's from a previous marriage Caylee Caylee I love you -- that she. She's 25 she has her own. Son who's five years old is she in Maine I know there -- Michigan Michigan originally we miss him terribly we just saw them a couple of weeks ago we had a family vacation. And had a lot of fun. I'm very involved too is my daughter's dance and she signed to competition dance team home in studio me. And so we spend a lot of time there and traveling on account to it to the competitions. And this is -- -- it well all. You know Massachusetts right fill the studios inform them. But we travel to. Maine Massachusetts. Maine Massachusetts basically for the competitions. And -- we just moved into a new house. All of great more work all Tony excellently adolescent daughter your husband to put nor police are doing some little -- -- -- So that I was still trying to get settled but it's going to be a process. And I feel very feels -- -- Wendy thank you so much for sharing your story Deborah thank you for no less and hearing what.

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