Well, I guess it's time for an update. Not sure if I'll get through everything I have to say, but here's a start nonetheless. I have an appointment with the surgeon on the 26th. The surgeon 
will be able to tell me whether this lymph node can be removed by surgery (hence the word surgeon) or if this will have to be handled with radiation. I've had a lot of people telling me that I need to get a 2nd opinion, and so I'm making an appointment at MDA. MDA, as in, you know, like the best cancer treatment center in the south. THE MDA. The problem, though, is this: how will I get treated at MDA? It's not like I'm going to be able to afford the out of network co-pays/deductibles/etc. Plus, how will stay there for 6 weeks when that's what type of radiation we're looking at? It's an outpatient 
treatment, I don't know anyone in Houston, and I don't make enough money to pay for that kind of hotel bill. It's a lot to think about. I guess I could work the corner. Some guys are really into scars.
For now, I guess we'll just take it one step at a time, and that means I'm only thinking of the appointment next week for now.
Bobby and I are both handling the news pretty well. Amazingly well, actually. We both keep saying, "Is it wierd what a relief it is to be fighting cancer again?" It's something only a cancer survivor can understand, I think. You just don't know until you've been there. It's the new abnormal, people. Sitting around waiting for it to return when every doc you see tells you it's most likely coming back will drive you up the walls. Knowing that it's here and it's really just one lymph node and that we can treat it, that's a relief. I know. I can't explain it.
Still loving the new oncologist. I called and left a message yesterday that I had a few questions, and I'll be darned if the buger didn't call me back today. I went through the whole list of what
I've been wondering: am I a stage 4 now? is the cancer in my blood? how long would radiation take? what would surgery look like if we're able to do it? do fish have eyelids? what's your favorite Olive Garden entree? We weren't on the phone long, but he was very willing to answer all my questions and even told me to call him back tonight or tomorrow if I thought of more. This is just a whole new ballgame for me. The Parkland Oncologists talked to you with one hand on the doorknob and one foot out the door. It just feels like such a totally new level of care and I can't imagine getting anything better elsewhere, as false as I know that to be.
Anyway, that's about it. I'll go ahead and plug my TNT fundraiser that I'm doing for the Leukemia and Lymphoma Society in case anyone is interested in that. It's a great cause!
http://www.active.com/donate/tntntx/tntntxLLee
As for now, I feel pretty okay, surprisingly. I've been thinking a lot lately, especially since Mary's death, that we don't just don't know much about this little life. Does it begin at birth and end at death? Or are we just assuming that because we tend to think of ourselves as all-knowing? Just something that's been rolling around in my head.
Okay, well, I'm all over the place tonight. But I'll be back as soon as I know something.
-L
will be able to tell me whether this lymph node can be removed by surgery (hence the word surgeon) or if this will have to be handled with radiation. I've had a lot of people telling me that I need to get a 2nd opinion, and so I'm making an appointment at MDA. MDA, as in, you know, like the best cancer treatment center in the south. THE MDA. The problem, though, is this: how will I get treated at MDA? It's not like I'm going to be able to afford the out of network co-pays/deductibles/etc. Plus, how will stay there for 6 weeks when that's what type of radiation we're looking at? It's an outpatient 
treatment, I don't know anyone in Houston, and I don't make enough money to pay for that kind of hotel bill. It's a lot to think about. I guess I could work the corner. Some guys are really into scars.For now, I guess we'll just take it one step at a time, and that means I'm only thinking of the appointment next week for now.
Bobby and I are both handling the news pretty well. Amazingly well, actually. We both keep saying, "Is it wierd what a relief it is to be fighting cancer again?" It's something only a cancer survivor can understand, I think. You just don't know until you've been there. It's the new abnormal, people. Sitting around waiting for it to return when every doc you see tells you it's most likely coming back will drive you up the walls. Knowing that it's here and it's really just one lymph node and that we can treat it, that's a relief. I know. I can't explain it.
Still loving the new oncologist. I called and left a message yesterday that I had a few questions, and I'll be darned if the buger didn't call me back today. I went through the whole list of what
I've been wondering: am I a stage 4 now? is the cancer in my blood? how long would radiation take? what would surgery look like if we're able to do it? do fish have eyelids? what's your favorite Olive Garden entree? We weren't on the phone long, but he was very willing to answer all my questions and even told me to call him back tonight or tomorrow if I thought of more. This is just a whole new ballgame for me. The Parkland Oncologists talked to you with one hand on the doorknob and one foot out the door. It just feels like such a totally new level of care and I can't imagine getting anything better elsewhere, as false as I know that to be.Anyway, that's about it. I'll go ahead and plug my TNT fundraiser that I'm doing for the Leukemia and Lymphoma Society in case anyone is interested in that. It's a great cause!
http://www.active.com/donate/tntntx/tntntxLLee
As for now, I feel pretty okay, surprisingly. I've been thinking a lot lately, especially since Mary's death, that we don't just don't know much about this little life. Does it begin at birth and end at death? Or are we just assuming that because we tend to think of ourselves as all-knowing? Just something that's been rolling around in my head.
Okay, well, I'm all over the place tonight. But I'll be back as soon as I know something.
-L
6 comments:
Hi Lori,
As usual your honesty cuts right through it. Yep, I know that feeling of wanting to know what I'm fighting and have been at that place where any answer is better than uncertainty. I've been lucky and what I'm fighting is not a recurrence (knock wood) but I do know what you mean.
I am so glad you like your doctor and get answers right away. That means the world. From what I've heard MD Anderson would be a good place for a second opinion, I tried to go there for that at one point, but as long as you have a team you are comfortable with, that's half the battle.
As far as MDA goes, they wouldn't see me because my out of network co-pays were too high. The problem is they wanted the flexibility to do what needed to be done once I got there and since my co-pay out of network is 50 percent it wouldn't work. Something you might check into if you want to go to MDA is ask for a case manager at your insurance company. I did that and I found out that the way they would pay in network rates, out of network, would be to have my doctor say why I could get something out of network that I couldn't get in network.
I didn't ask my doctor to do that because with UNC, DUKE, Blumenthal and Wake Forest all in network, there really wasn't anything MDA could do that I couldn't get in network. You may be in a similar situation but if you feel like MDA has something to offer you can't get from in network doctors, that may be an option for you.
As ever, Carver
Wishing you luck with your surgical appointment next week. It's just amazing how well you are doing, with everything. If this had happened to someone else, (I'm not mentioning any names), he/she would probably be a freaking out, (ahem).
You can get a second opinion at MDA or anywhere else without getting treatment there. Their recommendation may be the same as your original. I've also heard of major cancer centers 'consulting' with your local docs regarding treatment plans. I don't think radiation in Houston vs Dallas would be any different.
There is a website called 'Joe's House'. It's a hospitality website for cancer patients. It lists lodging with cheaper rates for cancer patients seeking treatment at large cancer centers. The website address is:
www.joeshouse.org
For MDA they list lodging as low as 15 dollars a day.
Good luck with EVERYTHING.
Hugs
Melissa
Little mama...
I too thought MDA was the answer when I wanted a second opinion but changed my mind when making an appointment and they asked for $8500 up front before they'd see me.
UT Southwestern has world renown researchers and they may have some of the best for melanoma.
The thing to do is to find out (ask your great oncologist) where the best of the best in melanoma practice. A researcher who teaches and has a clinical practice covers all the recommendations I read when finding a good oncologist.
Whatever you do, make sure you have a rapport with who you are working with. You are part of the team not just the patient.
Faith
Lori - You just keep Living STRONG, Girlfriend! Get your 2nd opinion and then weight the options. LAF (lance armstrong foundation) may offer some financial help if it comes to that, it is worth checking that out.
A donation is on it's way!
Your Nike+ Buddy,
Holly
Hola Lori!
I just came across your blog from "the cancer blog" article about you today.
My husband was diagnosed with stomach cancer about 18 months ago at age 32 (we got the freakin news the day before he turned 33. Pinata anyone?). We travelled from our home in Atlanta to MD Anderson for his surgery, but did all of the radiation/chemo here in Atlanta.
The docs at MDA are really good about working with your local oncologist and telling them exactly what treatment to give.
Also, they have lots of different housing options if you have to stay any length of time. They give you a huge printout of all of the options on your first visit.
My husband and I are always amazed at how nice everyone is there. You know how nice the local chemo nurses are? Cause they are angels at every chemo room in America. You kind of get that feeling from almost everyone at MDA. I've had nurses just come up and hug me. Guess I have a pitiful face?
ok, I'm writing a book here. But if you want anymore info on that place, give me a holler at amy@amyrue.com and I'm there...or here...you know what I mean.
Keep on living strong with your wonderful humor,
Amy Rue
I just want to thank you for saying what I've been thinking for so long. I've lived with the fear of recurrence and often thought it would be better to know and fight then to live wondering when it will show it's ugly face again. I've never expressed these feelings for fear of sounding morbid or demented to some people but I'm glad I'm not the only one. Thank you for your blog and everything that you do Miss Melanoma.
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