Support for LateToSchool

<p>Jym626, thank you for that; my daughter remarked over dinner Saturday that I have outlived the original prognosis. </p>

<p>Sax, thank you for the kind thoughts. I have decided to go forward with the whole brain radiation. I have input now from multiple doctors who assure me that while the numbers are small, there are a few who do make it through this and are able to go on functioning for many years. And as my friends have said to me, we’ve really been hopeful for an “outlier outcome” anyway, so, nothing really changes. </p>

<p>I am terrified. I do not like medical procedures and events in the first place, and so I like this even less. But I have a lot of support, and I am focused as hard as I can on thinking positive: thankfully, medical science has advanced to make this solution even possible, and, thankfully, these mets were caught in time and long before any symptoms. (My Miami doctors always advised - speaking more to my daughter than to me - watch for symtoms such as loss of vision, loss of balance, etc., no need to get another brain scan since the September one was clear, just wait for the symptoms to show up. Comparatively my new doctors in Virginia demanded this brain scan right away; I put them off; then, when they had me trapped in the hospital they ordered it and more or less forced it on me without telling me - I’m lucky they were so focused on this…)</p>

<p>It is astonishing how one can have such a serious disease, and no symptoms. </p>

<p>Overseas, I am glad that you came through your radiation o.k. I am curious to know what you have done with your diet. There is so much information out there and much of it conflictive, so, for the past several months I have just been eating whatever I want, trusting that my body wants to win this fight so it will demand what it needs; I just have to listen and respond. This has resulted in some very strange meals though. For example, it’s not unusual for me to eat something like 20 tomatoes in two or three days. Five or six bananas a day has been rather normal for the past month. Orange juice and apples I crave almost obsessively. Also, cottage cheese and olives, and insane amounts of ice cream. I have tried to read the labels and ingredients or vitamin content of the foods I have been craving in order to try to understand why I want them so badly, and, none of it makes any sense to me. </p>

<p>I know that there are diets proven to reduce the risk of cancer or recurrance, I just cannot seem to get the information all together in one place, and, a lot of the foods I have tried (broccoli or even just the sprouts, yuck) are simply disgusting, or at least intolerable to eat on a regular basis.</p>

<p>Glad you are going ahead with your treatment. You are already an outlier in so many ways.</p>

<p>And thank goodness Spring is here.</p>

<p>You are never far from my thoughts and prayers continue.</p>

<p>LTS – We will all be thinking of you. Picture the CC community crowded around your treatment table taking turns holding your hand.</p>

<p>Mary, I like the image. It is perfect. Except that, somehow, we are all holding her hand at the same time, and cradling her, oh so gently, in our arms. Can you feel that, LTS? I hope so.</p>

<p>I’m there in spirit, with the rest of your CC posse, holding your hand…</p>

<p>LTS,
I’ll be the one talking you through it-</p>

<p>‘Imagine your 100th birthday cake.
Take a deep breath and blow out slowly, try to blow out all 100 candles with that breath.
Okay, let’s do that again.’</p>

<p>Repeat as needed.</p>

<p>LTS, I’m a big believer in the idea that your body knows what it needs, so keep on eating those foods that you crave. Your body is telling you what to eat, and you’re in tune and listening to it. And in my book, anybody that craves ice cream is definitely on the right track! You’re in my prayers…</p>

<p>LTS, I have been off this forum for Lent, but my friends and I have had your “name” on our daily prayer chain since I first read your thread. (They still laugh when I give them the “LTS” updates.) One of the ladies has had wbr a year ago and her only bad result was that she had a mild headache for a week - turned out that may have been caused by a needed root canal!</p>

<p>We’ll keep praying and you keep excelling and exceeding. I think you should write a book - or at least keep a journal for publishing!</p>

<p>God bless you and your daughter! She must be a rock, too!</p>

<p>Keeping you in my thoughts and prayers today, and everyday, LTS.</p>

<p>Epistrophy – Wow. What an inspiring series of articles you have posted. Thank you!</p>

<p>Thinking about you all day today, LTS.</p>

<p>I’m gathered too. </p>

<p>(MaryTN, that’s a great image.)</p>

<p>LTS, for healthy people, ice cream is on the “bad for you” list because it is high fat, high calorie. Most of us have to watch our weight, and ice cream is one of those tempting foods that wrecks our diets. </p>

<p>But that is precisely why it is good for you – as a dairy product, it is also high in protein (as is the cottage cheese), and since you crave it, you are stoking your body with the extra energy & reserves you need right now to fight the disease. So it is very good for you right now. Given the impact cancer & various treatment regimens can have on your appetite, anything you crave is going to be better than anything you feel you have to force down. </p>

<p>Ben & Jerry’s has come out with some new flavors recently… hope you try them all!</p>

<p>LTS
Dedicating my yoga practice to you today. Did headstands. Usually don’t get a headache, but decided, when I did, that I absorbed any headache you might have gotten from wbr.
Hoping you receive this benefit and don’t/didn’t get a headache.
Back to lurking.</p>

<p>LTS, typically you have to give a ridiculous sum of money to get a wing of a hospital dedicated to you, but my rules are different. Right now, I get to design the beams and joists of the new wing of Texas Children’s Hospital, and so I dedicate structural chunks of my buildings to people who <em>I</em> think are worthy to have wings of buildings named after them, because oftentimes the folks who <em>do</em> get hospitals named after them and the folks who <em>ought</em> to get hospitals named after them don’t always jive. It’s one of the self-derived perks of being a nameless engineer at the bottom of the heap… I get to do all the actual designing, so since I’m the only one who lovingly brings them into existence, I think I get to dedicate them to whomever I see fit.</p>

<p>Today, I’m designing the LateToSchool Basement Spandrel Beams. They run around the entire perimeter of the foundation of the structure and hug it all together. They’ll never bear a plaque with your name, but please know that your spandrel beams will, in the coming years, give strength and hugs to two towering structures… one that’ll help expectant mothers with difficult pregnancies bring their children to term, and the other that will expand an already amazing pediatric hospital to give it even more capabilities and save even more sick kiddos than it already does. I think it’s a fitting tribute to an amazing person who has the strength to take on both cancer and the world.</p>

<p>Wishing you peace and strength!</p>

<p>To LTS and her Basement Spandrel Beams!!!</p>

<p>surviving lung cancer (in England)</p>

<p>

</p>

<p><a href=“http://www.burtonmail.co.uk/burtonmail-news-macmillan/displayarticle.asp?id=103795[/url]”>http://www.burtonmail.co.uk/burtonmail-news-macmillan/displayarticle.asp?id=103795&lt;/a&gt;&lt;/p&gt;

<p>What a cool and touching tribute, aibarr!</p>

<p>MORE surviving lung cancer (in England)</p>

<p>

</p>

<p><a href=“http://news.bbc.co.uk/2/hi/health/3244831.stm[/url]”>http://news.bbc.co.uk/2/hi/health/3244831.stm&lt;/a&gt;&lt;/p&gt;

<p>Aibarr, thank you for the basement spandrel beams; and I also appreciate all of the wonderful posts from everyone else. I did read several of them before I left for my appointment this afternoon, and, I started to cry. </p>

<p>Having said that, either our health care system is even more goofed up than I could have imagined, or, I’m really, really bad at making choices. How we even got to today’s appointment is that the radiation oncologist’s office called me Friday, and asked to make the appointment for final staging for this week. </p>

<p>Since I had an appointment in the same building with my primary oncologist this afternoon, after confirming the staging would only take 15 minutes, I said sure, while I continue researching, let’s go ahead and make the appointment for final staging, that way it will be set. </p>

<p>My plan when I set the appointment was to (1) conclude my research over the weekend; (2) talk everything over with my primary oncologist today; (3) proceed with treatment, if that was the final decision. (2) was really important: even though I have consulted with his partner during an appointment last week, as well as two other doctors, I have not seen my primary oncologist since I was in the hospital. He has been on vacation, and the last time we spoke, his expectation was that I was getting cyberknife. He knew nothing about the change in plans, wbr, etc., because we have not had a chance to discuss it. And talking to him before proceeding is really, really important to me because I have no idea how wbr might impact a chemotherapy treatment plan, plus, I just stone cold want his opinion on the matter. </p>

<p>So, today, my daughter picked me up; we arrive at the appointment; the entire drive she is telling me about her new boss here in Washington (she transferred her job here and - different story - it’s not working out very well, but, oh well, career issues, I’m feeling bad for her - I feel like I need to export her back to Miami so her career does not implode) anyway, we arrive, they take me right away, and as they do, I confirm, thinking back to one of Calmom’s posts, we are doing staging only today. Everyone verbalizes that we are all on the same page. </p>

<p>I don’t know if anyone here has ever experienced wbr before, or supported someone who did, but, basically, a mask is made; it’s a rather hard plastic, and for the staging, as well as for the procedure itself, you lay on your back on a table, the mask is placed over your face and it fits very, very tightly, and then, it is bolted down to the table. You absolutely cannot move your head, and, it takes some effort to not panic. To give you an idea, the fit is so tight that it’s now seven hours later and I still have waffle marks all over my face from the mask. </p>

<p>In any case, they proceed with the staging, which doesn’t take too long and as long as I put my mind in another place (thanks CC), I’m o.k. </p>

<p>Then, just when it was over (I knew it was over because they mark the mask on both sides), one of the nurses came back in and said “o.k., the doctor said he’d like to go ahead with your first treatment, so, here we go…”</p>

<p>I wonder if you can imagine yelling “NO, STOP” through a hard plastic mask, while attached by your head to a table. No trauma though, they did stop immediately; they let me up and out of the mask without further discussion; the nurses said something like “well…since we were all here and already all set up…” however, my daughter later told me the doctor was very upset and told her that I just wasted his time (???). </p>

<p>In any case, my daughter tends to overstate things sometimes; I spoke to the radiation oncologist myself; I explained to him that I wanted to run the entire plan by my primary oncologist, that I had an appointment with him in the same building in just minutes, etc. The man was very nice; he assured me that the mets were very small and that I have “plenty of time”, and that I should not be rushed into making a decision. </p>

<p>I told him it wasn’t a matter of being rushed, but rather than I needed to talk to my oncologist (for the fourth time).</p>

<p>This doctor is listed as one of the top doctors in Washington and has an outstanding CV; in addition, I like him personally, and, I do trust him. I think. But this is a very weird situation - I didn’t even sign a consent form for treatment and they were ready to deliver my first treatment. </p>

<p>In any event, I set an appointment to begin the first treatment Wednesday (I’m in NYC tomorrow), and went to see my oncologist…</p>

<p>My oncologist said huh??? How come I don’t know this??? He’s looking through his paperwork and my chart like he expected to see a report on the matter. Bottom line, he thinks that the mets are small and that I can wait a few weeks, he also thinks that attacking the primary cancer is priority #1, and, he is going to call the physician who is the head of the department tomorrow, ask what in the world happened, and doubly confirm that cyberknife is not an option and that I really do need wbr, AND, if I do, he is going to have that doctor oversee things. </p>

<p>So, strange, strange afternoon; but it was gratifying to hear how encouraging my oncologist is about his assessment of me and how things are going… </p>

<p>I really, truly appreciate the prayers and kind words and support of everyone here…thank you all so much.</p>

<p>LTS,</p>

<p>Oh my. </p>

<p>First and so important:

Hooray!</p>

<p>But, next, I do not think that you are encountering these miscommunications, misunderstandings, muddlings because of some bad karma. On the contrary. Those of us who have had complex medical issues are nodding our heads with recognition. The system IS messed up. Keep your daughter close by. She can shout “NO” even if you cannot, for whatever reason.</p>

<p>Get better and help us to fix this mess. I expect to see you testifying before congress within the year. I selfishly hope that you will put aside your anonymity at that time so we can either be in the gallery or watch you on TV. I 'd like to reserve a gallery seat.</p>