<p>LTS…if possible, try to get high level academic medical recommendations to those high level academic doctors in the cancer institutes. Think like a CCr. The higher the rank of the referring doc (from a ranked medical school), the more likely that name will get recognition at the cancer institute. </p>
<p>Those personal academic referrals are a big deal in that super brainpower world. </p>
<p>If you know a friend who has a brother or an uncle or a sister who is a big deal at one of the top five medical schools–reel in that favor and ask them to please refer your case to so and so.</p>
<p>and your daughter – wishing you the best. My DH is an oncologist and
encourages many of his patients to obtain a second – and sometimes third –
opinon. I hope that when you are tired or feeling crummy that very good friends will step up to the plate and become your advocate. I’ve been through cancer diagnoses and treatments with my nephew (at age three) and several best friends. I feel privileged to be able to help them out whenever I could.</p>
<p>I, too, don’t post often, so hadn’t chimed in with my good wishes because I didn’t “know” you. But my husband asked me this morning why I seemed so down, and I responded without thinking, “Latetoschool has cancer.” This truly can be a community of caring. My thoughts are with you.</p>
<p>LTS - my mom had the same reaction to online research…she just had to stop. And she is an RN. She did a fair amount of running her own records around as well since her oncologist is at MDA and she was actually having her chemo delivered by a doc at her hospital/workplace in Victoria, 2 hours south of Houston. (Her local doc and the MDA oncologist were previously affiliated and worked this out for her.) But she said she needed figure out a way to have cancer days and noncancer days and the internet was preventing that. Plus the information can be disorganized and sometimes very hard for a layman and even RNs to understand…she found herself reading things that scared the ‘you know what’ out of her, only to have her doctor talk her off a ledge. </p>
<p>I think it is good to get your second opinions and most of all listen to the docs who are telling you they can get you into remission. Having dealt with oncologists directly three times (grandmother, cousin, mother), I’m here to tell you…they are a special breed, blunt with no b.s…(no offense 3boys ;)) My experience is they are not going to ‘lead you down a path’.</p>
<p>Finally, I’m not sure where you are seeking second opinions, but if you are considering MD Anderson and need ANYTHING done here in Houston, I’ll gladly help. I’m pming you with my real info.</p>
<p>LateToSchool: I would like to respond to this comment from the perspective of a 32 year cancer survivor. </p>
<p>“There has to be a way to maintain a positive mindset, without closing one’s mind to useful information. I am wondering if the stress of being so afraid of this thing is what does people in, more than the rapidly dividing cells.”</p>
<p>The greatest gift of cancer was learning to identify what I can control, and quickly being able to realize what I cannot control. 32 years ago there was no internet so I didn;t have to make a conscious decision to not research- I had access to about a dozen journal articles and as a premed student I had the skills to read them. I had to return to school immediately after surgery (there was no other treatment available at the time) and so I was very, very busy. Once I was not busy, I was overwhelmed emotionally with my reality. </p>
<p>It is very important to seek reliable information, to access specialists who are cutting edge and to feel like you are making reasoned decisions. I think meditation and other relaxation strategies coupled with working to be mindful in how you think (cognitive restructuring) is very, very useful in reducing the very real stress. YOu are absolutely right that you have to use all the tools available to you to achieve a balance of understanding, information, trust, communication, acceptance and fierce determination. I am sure there is no ‘right formula’- everyone of us is different-- none of us is a statistic-- I wish you much strength and support.</p>
<p>robyrm2—your post gave me goosebumps. LTS…with so many “invisible friends” pulling for (I was thinking about you on my way to the store today), I think we’re getting the stars aligned for you.</p>
<p>Robyrm2, thank you for posting that. You are so right - last week, when I went to the airport to catch my flight for some meetings, I was euphoric. For a few wonderful hours I forgot that I have cancer. I get to the same place during the day when I get deeply engaged in my work. I am so thankful and so grateful to have work to do that I love, and even more grateful that I am not restricted by geography. My work is what is going to save my sanity, surely. </p>
<p>The other issue you nailed so accurately is that - in a very weird way, this is a gift. I find that in just a matter of days my world view, perceptions, priorities and even political opinions in some areas have shifted dramatically. One issue that has me stunned beyond belief is the condition of the health care system, and the overall quality of patient care and interaction. (I don’t refer to individuals, many of who have been very kind but rather the larger, machinated malfunctioning system.) Dear lord how have I stumbled along so naively for 48 years, oblivious to what has to be just horrific suffering and deprivation that others have been enduring. OMG OMG OMG. I find that I must use my influence to get certain things done quickly; just having material resources isn’t quite enough. Thankfully, I can get in a car and go somewhere to get what I need, or make a phone call, or summon a banker or a lawyer or a support person of some sort. What, then, happens to people who have little - or not enough - and especially if they do not have strong relatives or advocates to help them? </p>
<p>The answer is so maddening it makes me want to start the mother of all wars on behalf of people who are sick and suffering and have no resources, or not enough resources. I cannot even fathom their suffering, and it is making me crazy, thinking about it. </p>
<p>Alumother, I am grateful. I am expressing myself poorly, but I am very grateful.</p>
<p>LTS, Once this crisis is behind you, and you’ve beaten your own disease, then you can start the mother of all wars, and I for one will join your army! I think you will be a formidable general.</p>
<p>Hey, LTS, sending you all the strength and determination I can muster so that you have a little something extra to pull out of your hat when you need it. Good darn thing your CC army is invisible right now…or your food bill would be astronomical. Good thoughts your way, have a good night.</p>
<p>This soldier in your army of pray-ers and well wishers was praying like crazy this morning while walking my dog. And continuing to do so throughout the day.</p>
<p>LTS- I think you are right to step back on the research. When my son had a serious problem that required 5 surgical procedures I was doing lots of research which was driving my anxiety level through the roof. I decided to put my trust in the doctor that I chose to treat him after getting other opinions and cut back on the research. The time spent researching is better spent laughing and visualizing water and chemo drugs killing and washing away the bad cells.</p>
<p>I read about a woman with cancer in her liver and she gathered her friends and they prayed together as a group one afternoon a week and visualized healing light enveloping the woman. This article was written many years after her diagnosis and she was doing very well.</p>
<p>I propose all the ccers have a quiet moment at the same time and visualize healing light for you. What is a good time for you to stop visualize as a group?</p>
<p>LTS, in good health and in sickness, you have been an inspiration to many of us. I want to join your CC invisible army and send get well wishes your way. Please take care of yourself – we need someone like you to lead the nation in healthcare reforms! :)</p>
<p>A lot of good advice. As a physician I especially liked sunnyflorida’s post #88. She wrote a lot for everone to pay attention to- make a copy of it to reread whenever in the future.</p>
<p>Latetoschool while we have not formally been introduced, I have read many of your posts.</p>
<p>Along with the others I send light and healing your way. One thing is for sure, if there’s healing in numbers, you’ve certainly got the numbers!</p>
<p>LTS,
“D.A.M.N” can I write that on the board?
As I type it, I hear the voice of a friend. She uses the word as a positive as well as a negative. If things are ****ty, she says it. If things are wild, she says it. Sounds like your situtation sums it up.
You also remind me of her. She is articulate, smart as just about anyone I’ve even known, loves life, and seems to be in this world on a wild ride. Keep it up! We’re cheering, (& crying) in the background for you and with you. I truly hope that if we each take on just a small bit of your burden, it can lighten the load?</p>
<p>I have found that it is the injustices and inequities that I’ve stumbled across in life which made me angry enough to “do something”. Perhaps this is your injustice. You need to survive this. The medical system, or more importantly all those in medical need, need your input, your intelligence, and your leadership to help a wave of change! We need you in that mother of all wars ;-)</p>
<p>Having read page one and page 12, I know I am missing a ton of stuff.</p>
<p>First, my sympathies and my best wishes. </p>
<p>Now, on to the practical stuff. There’s nothing like a little cancer to put everything in perspective, which is the good news. I learned this 7 1/2 years ago when my husband was diagnosed (he’s in remission now) and again last summer when I had a low-grade tumor removed from my own femur. Oh well, life goes on anyway.</p>
<p>I have also learned to take all those survival statistics and IGNORE them! Most don’t reflect any newly developed treatments. And the newly developed treatments make a HUGE difference. A good friend has beaten back stage four kidney cancer (with bone, lung, and brain mets) with the help of a new treatment. My husband’s lymphoma vanished in the face of Rituxan treatment five years ago… Most of the stats are based on out of date information. Really. Keep in mind that YOUR body is different from every other person out there.</p>
<p>This is exactly what I wrote to LTS several days ago, but perhaps it’s worth repeating on a public board. I suspected that there must be many cancer survivors on this board; being a cancer survivor myself, I can relate to their messages. And being a scientist developing cancer drugs, I think I know exactly which treatment has cured your friend. I can attest that there is an entire generation of new cancer drugs and there are indeed amazing. I hope they’ll bring at least a little more justice to this world.</p>
