Support for LateToSchool

Parent Cafe
1161

<p>LTS,</p>

<p>My thoughts are with you.</p>

<p>My 78 year old non-smoking mother, who has been “healthy as a horse” her entire life was diagnosed with non-small cell lung cancer in April. It had also metastasized to her bones . At that time, she was told she had 2-3 months to live if she opted not to do chemo and radiation. She did extensive radiation and chemo, and continues chemo.</p>

<p>Last week she had a cat scan that indicates that she is no longer “stabilized”.
They are now starting second stage chemo tomorrow.</p>

<p>He doctor’s response when giving her the news. “Well, I told you the prognosis last April. You are lucky to have lived this long.”</p>

<p>The funny thing is, my mother now believes this. She was not offended by the callous remark at all. She is now taking every day one day at a time. She is still fighting.</p>

<p>Personally, I think the Doctor’s remark was uncalled for and insensitive.</p>

1162

<p>LTS,
It ain’t over til it’s over…is one thing to keep in mind. I completely agree with you that this doctor is not the one you want in your boat as you make this journey. The ONLY thing in our life we can control is our attitude. We do that through knowledge and remaining open to new… new anything. In your case, there are new trials…and you deserve a shot at them as much as anyone else. </p>

<p>I had an illness several years ago…my local doctor sent me to Boston for treatment. I personally liked all the doctors, local and remote. My insurance required a second opinion prior to surgery. My husband and I met with the new second opinion doctor…and he was so dismissive of us initially. However, we were extremely informed and challenged him early in the meeting. He paused, pulled out the referral letter, reviewed my case briefly, looked up and actually said, “Oh, OK, you guys do know what you are talking about.” He basically rubber stamped my treatment plans… the whole thing was absurd. </p>

<p>Unfortunately, the current insurance situation doesn’t allow us to always choose the doctors we want…the care we need… but WE are OUR best advocates. No one else is a reasonable substitute. </p>

<p>It is often very true that sick people cannot manage their own care. They are sick. We have 100% of energy…if some of our resources are fighting nausea or pain, we have reduced energy to seek info, other options etc. That is when family is usually the front line of offense. Many people will not seek all the facts because they cede the knowledge advantage to the doctor. But, sometimes, labs and doctors make mistakes or don’t look at the details. </p>

<p>The doctor’s parting comment about not having time because they had other patients…we had this same conversation the previous week etc… my thought on that would be to use that nugget of info to help you schedule future appointments. Ask for the last appointment of the day…or the last one of the morning before the doctor’s lunch. Bring the doctor their lunch and share that time in detailed discussions of your options. </p>

<p>You need a T-shirt from the Monty Python show on Broadway… the shirt says “Not Dead Yet” … I bought one… it is my plan to have it on when I am buried!! Seriously, I have a good friend suffering from a horrific unknown illness. Did a mini-triathalon in Nov 05…started falling down in Jan 06… by April, could no longer walk unaided. Spent 3 mos at Mayo Clinic, no diagnosis, but unable to really move. Given a 6 week life expectancy… and she settled into a nursing home. Resisted learning ways to communicate because of the effort involved… 6 weeks became 3 mos, then 6 mos… it is now almost 2 yrs later…and while still alive, her $$ resources are very limited and everyone’s energy is exhausted…and they still have no idea what has shut down her systems. She fights every day to swallow nutrition… her quality of life seems questionable at best…but it is no one’s choice but hers. And she is choosing to fight, to swallow, to somehow communicate her needs etc. My point is that you have your own battle and YOU get to choose YOUR response. Surround yourself with folks who support your choices. It is okay to take a moment or a day to recalibrate your position. Then move on…continue to seek the best care you can get…and love who you are and the gifts you have been given to maximize your options. Make the most of your life…it is the ONLY one you have!!</p>

1163

<p>Do tell us what you learn tomorrow. You are entirely rational on the subject of your very serious cancer. Do not let anyone infer that you are being difficult/indulging in intellectual rabbit holes etc when seeking trial treatment…that is simply so unfair, not true and your anger is so understandable.<br>
Remember that many of today’s forward treatments were yesterday’s tentative experiments so there is no reason to give yourself over to the best palliative care now if you have options to pursue.<br>
I know you must be weary of having to be so very vigilant, and I wish it wasn’t true that vigilance is necessary. </p>

<p>I did note padad predicted that some trial docs may also be lacking in terms of bedside manner, so keep you eye on your goal which is to begin aggressive intervention to prolong your life, and walk past what you can’t alter in others.</p>

1164

<p>I just read a great thought on a marquee I passed by:</p>

<p>“Worry is a misuse of the imagination.”</p>

<p>lts, I know you don’t spend your time worrying, but in thinking up new strategies to fight your disease. You go!</p>

1165

<p>LTS,
Other posters have said everything far more articulately than I ever could. But, it’s OK for you to feel frustrated, it’s OK for you to cry. Allow yourself those things. You have every right. Try not to let them overtake your life. I know you will not do that. In fact, while I am typing this, I’m betting that you have made a half a dozen more phone calls re: trials. :wink: I’m betting that you will use all you accumulated strength and knowledge to find the right doctor and setting. Best thoughts and prayers for a much better end to your week.</p>

1166

<p>Epistrophy has so many links that perhaps he has already linked this one. But if not, here is a great one from CNN:</p>

<p>[Cancer</a> struggles inspire patient crusader - CNN.com](<a href=“http://www.cnn.com/2008/HEALTH/01/30/bg.paf.founder/index.html]Cancer”>Cancer struggles inspire patient crusader - CNN.com)</p>

1167

<p>LTS…keep up the good fight. We’re all behind you. </p>

<p>You are in charge of your journey. Keep seeking the paths you prefer and don’t give up. I hope today yields some positive steps.</p>

1168

<p>LTS:</p>

<p>Something that some of us forget: We are “allowed” to cry. Sometimes it is the most sane response to the situation in which we find ourselves. It is part of “going through it, not around it,” which sounds like part of who you are. Pity the poor folk who cannot cry.</p>

<p>So we cry. Then we wipe the tears. Then we move forward. Sometimes we move forward as we weep. (To be repeated as necessary.)</p>

1169

<p>Good luck on your phone calls today, LTS.</p>

1 Like
1170

<p>I hope you find some good options today, LTS. Of course you resent the fact that this crisis is consuming your life when you’d rather be doing other things. But these few days are critical, and what you accomplish this week could lead to increased quantity and quality of life. Keep being the “difficult patient” - this is what gives you the chance to beat the odds.</p>

1171

<p>

</p>

<p>[The</a> Associated Press: Pot Vending Machines in LA](<a href=“http://ap.google.com/article/ALeqM5hiL8dtDwoW4iYiA0h-PDjgTkkP3wD8UG58V00]The”>http://ap.google.com/article/ALeqM5hiL8dtDwoW4iYiA0h-PDjgTkkP3wD8UG58V00)</p>

1172

<p>Thank you all so much for the posts of support. This morning was truly horrible but this afternoon, perhaps better, IF this is not a matter of maybe I am just “doctor shopping” in order to get the answer that I want as a mechanism of avoiding reality. </p>

<p>I called the hospital where I prefer to be treated, got a list of all of the oncologists with priviledges there, and got an appointment with one this afternoon. </p>

<p>We talked for nearly 45 minutes; he told me that his patients live on average 2-3 times as long as anyone else’s; I asked why; he said that specific to lung cancer, he does not always go by the book (with the consent of the patient, of course). The problem is that not a lot of research on large patient groups exists for changes in treatment strategies, etc. </p>

<p>I explained to him my position, and my reasoning for not wanting to go to Topotecan right away, and he agreed with me. He also said it’s not a good idea to go to clinical trials right now, leave those for later if they’re needed, for now let’s go with what we already know works, and it’s perfectly appropriate to go with cisplatin/irenotecan for the next round, or, some other combination. </p>

<p>I asked him why his opinion differed so greatly from the oncologist I originally selected in this area, and he said that he has been an oncologist for about 20 years longer, and has seen lots of small cell cases, and has had lots of experience. He said the statistics in current books and publications don’t really measure up against what happens in today’s practices, and, if he always only went strictly by the book, it wouldn’t work for many of his patients and they would not do as well. </p>

<p>He also wants me to do another brain MRI - I was actually wondering when someone was going to care enough about me to worry about that. Sclc mets to the brain rather quickly, and can cause sudden seizures and all sorts of nightmarish things when it does, so, I was relieved that he actually cared enough to think of that.</p>

<p>He also knew the correct answer to the availability of Topotecan in oral form, and a few other details. </p>

<p>Overall I felt good about him - he’s willing to think outside the box but for reasons based on the realities of the lag time of research, vs. a position of desperation. </p>

<p>As I was leaving, he introduced me to one of his long term survivors, in the office for a check up. She greated me warmly and offered her telephone number if I wanted to talk. </p>

<p>Since it’s getting late in the day and I have no telephone call back from the original referring physician’s colleague from our discussion of yesterday afternoon (insulting, that), if the due diligence checks out, I’m going to go with this new doctor.</p>

1173

<p>Sounds very good, LTS. I am pleased for you that you have a partner who, if all checks out, is thinking the way you do. Thank you for keeping us posted.</p>

1174

<p>latetoschool,</p>

<p>I REALLY HOPE AND PRAY that this doctor is the one…It does sound hopeful!! And meeting that long-term survivor sounds like good karma.</p>

<p>Hang in there!!!</p>

1175

<p>LTS, I am SO glad you connected so quickly with a physician who seems compatible with your needs – not to mention on top of all the details which you have researched. </p>

<p>Thank you for taking the time to fill us all in.</p>

<p>I hope you have a better evening tonight – and many, many better days than the last few.</p>

1176

<p>LTS, this new guy sounds like just the ticket. I have been thinking about you all day long and waiting for you to post (and you are so faithful to do that!).</p>

<p>So much in your post sounds great…his willingness, even eagerness to try new things. His admonition that the published stats are not relevant because of advances since. His interest in assessing your status further (Brain MRI). Bless his heart (a southern thing, I guess), he has chosen to do this oncology thing from a completely different perspective than the other guy you saw, and I am so thankful for that! It seems he is willing to let individual patient needs guide his treatment decisions, rather than whatever the current “tried” methods might be. He is a thinker and an explorer and that sounds a lot like you to me.</p>

<p>And how AWESOME that you met a long-term survivor in his office!!! Fantastic.
Carry on!!</p>

1177

<p>Perhaps this doctor was just meant to treat you. Perhaps you were there just to meet a long term survivor when you questioned whether you should accept death as your fate. I don’t know, but I do believe that at times things happen for a reason. It is funny, how in less than 24 hours, one’s whole outlook can change! I am glad that this afternoon went well!</p>

1178

<p>I unfortunately tend to be an ostrich when facing difficult situations. You are teaching me so much! Look at you, saying three times (Is that right? I’m losing count.) “No, you are not the kind of doctor I want,” and persevering till you find someone who can be a contributing member to your team! You aren’t looking for a magician, or a hand puppet, or a parrot who just says what you tell him/her – but neither do you want someone who has given up before the game is over. Or who doesn’t even want to get in the game! (Pick a metaphor, any metaphor.)</p>

<p>I really hope this guy proves to be “it” for you, so you can turn your attention to other things. </p>

<p>Way back when, I posted the song “Stand.” I still think of you whenever I hear it. A refresher:</p>

<p>Everytime you get up
And get back in the race
One more small piece of you
Starts to fall into place</p>

<p>Cause when push comes to shove
You taste what you’re made of
You might bend, till you break
Cause its all you can take
On your knees you look up
Decide you’ve had enough
You get mad you get strong
Wipe your hands shake it off
Then you Stand.</p>

1179

<p>LTS, This is the best sounding news so far. The New Yorker had an article on the Bell Curve of medical care about two years ago, where the article pointed out how survival on the same disease (cystic fibrosis) differs widely being treated at different centers. I recall the essence was not only experience but also the degree of the doctor knowing the patient’s mediacl conditions well and able to intervene ahead of time. Hopefully, your own search will land you at the right side of the curve. Best wishes.</p>

1180

<p>This is good news, LTS, and it is terrific that you have found this physician and met the other patient in the office, no accident that this was a reaching out person, too…serrendipity, perhaps. I too return here frequently to check up on you, and I appreciate your willingness and inclination to share your news. But we do know that we are bystanders, and you must do only those things which are good for you, and if you need your space, time, and energy to get on with things, that is okay, too. Cyber-hugs to the bravest, toughest CC’er we know! Lorelei</p>