<p>LTS- Wishing you a beautiful, energy filled day!</p>
<p>Flying into DC this weekend! Due to migraines, decided it wasnât safe to drive so far, since it causes me to abruptly lose my vision. (However, I learned yesterday that my church changed cleaning products about the time my migraines started. Both headaches have happened in the afternoon after I spent the morning at church. Maybe???) </p>
<p>S is out of town both Saturdays I have to fly, so he is trying to teach me how to use the busses to get to Bowie, MD. Argh - hate to do it with suitcases! But Iâm a big girl now. Anyway, visiting my Hâs great aunt (86, with more energy than I have) for the week. It would be fun to meet up at some point, if you have any down time.</p>
<p>How many, many things
They bring to mind â
Cherry blossoms!</p>
<p>My bad for taking the thread down such a dark, winding road; anyway; one of the survivor stories in the link ADad provided on the pancreatic cancer survivors contains a very power piece of advice for caregivers, hospice workers and the like - âdonât get to the cemetary before the patient gets thereâ. </p>
<p>The five year survivor in Texas and I have been battling this concept for a while, in the broader lung cancer community. He and his wife - (she is one of the most selfless, dedicated caregivers I have encountered so far) - have been trying very hard to help others who have our diagnosos. He has met with frustration every step of the way - first with the local hospitals not supporting his attempts to form a support group, while simultaneously over-supporting the more socially acceptable cancers and illnesses; then, several hospice organizations have turned down his offers of help, the main reason being he doesnât have a nursing degree or something like that so they will not even allow him to offer counsel or comfort to the dying. </p>
<p>So, rather pitiously, we have been trying to help people, one on one, in a sort of parochialized way. We cannot tackle the bigger issues with regard to the health care system so this is what we can do. He has a LOT of knowledge, and he and his wife are incredibly dedicated to this. I have money and resources, but I am clueless on the backstory stuff. Our long term plan is that if I can achieve a remission position, I will travel to Texas, meet with them, and we will try to put some business structure to this. We have been able to give little bits of money away here or there, in order to allow someone to fly to a trial site or buy food or whatever, but again our efforts are pitiful and disorganized. The five year survivor spends a LOT of his time on the telephone, talking to cancer patients of all stages, trying to give them hope and support. Someone, somewhere, has to do something.</p>
<p>A lot of the efforts end with frustrating results. For example, we will try to advocate even the smallest amount of physical activity to try to convey to a very sick person to get out of bed and get moving, believing strongly that activity is the answer to any hope of recovery, and often, the primary care giver wonât support the recommendation. It seems that they just want the patient to hurry up and die, so that their lives can get back to normal. We try to convince the newly diagnosed to give up smoking, but, we have a situation where a caregiver continues to smoke in the home, even though the lung cancer patient hasnât smoked in 20 years. And so onâŠ</p>
<p>Along the way, we have encountered simply the most infuriating frustrating situations and learned of the most horrific experiences. âDonât get to the cemetary before the patient gets thereâ sums it all up. Iâm not going to get into a criticism here of structured organizations that try to offer support during the dying process (although based on the information that has crossed my desk in the last several months, I have a very negative viewpoint of them - just terrible experiences have been related to us), and Iâm certainly not going to go down the road of describing some of what we have encountered with parasitic care givers. </p>
<p>Also, in the process of looking for people to help, we end up reading the horrible comments such as the one I read from the oncologist. The five year survivor laughs these things off (I suspect that privately he is equally concerned but he laughs to try to keep me off the ledge); but, they bother me enormously. It takes something like 10 links from Epistrophy to mitigate just one of these horrible comments. </p>
<p>Bottom line, if the cancer patient hasnât given up the fight yet, itâs probably a good idea to let them keep right on fighting, regardless of how inconvenient to everyone else. </p>
<p>Binx, I sent to you a PM with my contact information.</p>
<p>Thanks very much to everyone for the supportive posts and statements of hope. I sincerely appreciate it.</p>
<p>LTS,</p>
<p>Wishing you happy, productive, work-filled day today!</p>
<p>KEEP ON FIGHTING!</p>
<p>Here is a link to a great program called corporate angel network which allows cancer pts/families to ride in the empty seats of corporate jets for free (to treatment facilities). How cool is that.
[Corporate</a> Angel Network - Home](<a href=âhttp://www.corpangelnetwork.org/]Corporateâ>http://www.corpangelnetwork.org/)</p>
<p>LTS: your last post jogged my memory on this.:)</p>
<p>LateToSchool,</p>
<p>Your new mantra: Iâm the variation.</p>
<p>Here is an excerpt on attitude from Gouldâs essay that I linked above. Please note that he lived 20 years beyond his 8 months prognosis.</p>
<p>
</p>
<p>And this is my favorite part:</p>
<p>
</p>
<p>You exemplify Gouldâs living and fighting attitude. Keep reaching, 3Ks</p>
<p>LTS - you are strong and you can beat the beast!
Keep up the positive attitude and just ignore some of our posts. Go smell the cherry blossoms, take long walks with your daughter, listen to some books on tape or NPR programs - far better than watching TV in my neck of the woods. And you can do it while enjoying the scenery :-)</p>
<p>Five years down the road you will be the five year survivor who beat the odds, strugling with the question - Why? - and other cancer patients will be contacting you with their hopes and fears.
Start thinking about that book !</p>
<p>In the cherry blossomâs shade
thereâs no such thing
as a stranger.</p>
<p>Kobeyahsi Issa (1763-1828)</p>
<p>
</p>
<p>I just want to say that anything on your mind should be able to be discussed whether dark, winding, or hopeful news. I donât think that you should have to sensor your thoughts, or what you want to talk about in the moment, so others are more comfortable. I am sure that you are going through the full range of human emotions, and that is okay. You can beat this! Stay strong.</p>
<p>CountingDown - I like that! Itâs not traditional Haiku, though, is it? Syllables donât work. (Lost in translation?)</p>
<p>Well, I just came back from 6 of 14 treatments of wbr. I ran into the doctor who is the head of the department - the âvenerableâ physician who was so horrible on the telephone, just prior to my final decision about this. </p>
<p>I inquired of his nurse earlier this week if I could postpone my last two days of treatment, owing to a business commitment scheduled at a military installation where I am speaking as a subject matter expert at least one day, and serving as some sort of contributory expert the second - this has been planned for nearly six months, and while I could cancel my participation, it would be an unfortunate loss. I have worked very, very hard for this. So anyway, the answer came back from his nurse, no problem, they can schedule the last two days when I return, and it is not going to compromise my treatment in any way. </p>
<p>But talking to the five year survivor last night, he panicked, and so no, no, no, terrible idea. He said I can expect to have side effects such a brain swelling towards the end of treatment; the headaches are horrible; I will run the risk of compromising my professional position if I am anything less that 100% poised and polished; I will be hundreds of miles away from my medical team, etc. But most of all he said to me - this is small cell, donât even think of messing with it. </p>
<p>So this made me rethink it - maybe I shouldnât go. We cannot really ask anyone else because he had gamma knife for his, and everyone else he knows who has had wbr is dead. </p>
<p>So when I ran into the doctor this afternoon (he couldnât possibly have been nicer) I asked, can I ask you these questions? Bottom line, he said I am fine to go; not everyone gets swelling; they are taking me along very, very carefully, I am doing great, etc. it is not a problem at all for I asked - o.k. - but - not toooooo careful, right? We are killing the cancer, right? He said not to worry, this is more than enough to kill the cancer. </p>
<p>After some more discussion, it turns out he is former military himself, and of the same branch where I have my commitment. I thanked him profusely for his service in uniform. We compared notes on mutual matters of interest related to the topic of the military event. He inquired about my husband. I explained I do not have one. He responded that we will have to find me a husband. MY DAUGHTER (who has been silent the entire time) JUMPS IN TO SAY âARE YOU OFFERINGâ? LOL. He and his nurse burst out laughing. Thatâs when I decided it was time to go. </p>
<p>But whatâs really important, and what got said somewhere in the middle, is, I thanked him for addressing my concerns; he told me he has never in all of his years of practice been interrogated so thoroughly by any patient, ever. I asked - was I really that bad? I will of course try to tone it down in the future. He said no. Donât change a thing. Just keep being who and what you are. Donât even consider being anyone differentâŠ</p>
<p>I do not know if I will go on the trip or not, will make the decision by this weekend. </p>
<p>3kS, thank you for your posts. I appreciate it. I have said before that the hardest part of this battle is mental. Itâs not an easy matter at all to stay balanced with it, and, I am discovering it is even harder when I must report for treatment every single day. It is easier when it is just chemotherapy; you go; then you have some days break from it.</p>
<p>Sax, thank you for the link. We did have that organization in queue, but, we messed up. Somehow we didnât use it correctly or register in the right way or something - I donât remember. The patient in question had mets, and needed to get across the country for a trial, and, trials are goofy - problematic - intake procedures, etc. And her adult daughter was traveling with her. So we somehow goofed it all up and ended up paying for regular commercial flights. Thank you for the reminder though; we just have to somehow get better at this and with experience hopefully we will.</p>
<p>binx, it was a translation by Robert Haas.</p>
<p>LTS,
Hope your chat with the onc today puts to rest some of the dark thoughts youâve been experiencing. The military background makes perfect sense with his initial gruffness, too (speaking as the D of career military).</p>
<p>LTS, Binx,
Count me (and I suspect CountingDown) in on any DC meet-up! </p>
<p>Glad you and the Department Head have not let your first encounter color your relationship :)</p>
<p>Is it just me? I think itâs cool that MD wanted to fix you up, LTS. It sounds like he sees you hanging aroundâŠ</p>
<p>SBmom: That was my first thought also! :D</p>
<p>I see it as evidence that she is as dynamic in real life as she is in writing.</p>
<p>and another</p>
<p>
</p>
<p>[Woman</a> beats lung cancerâs long odds, rebuilds career - Triangle Business Journal:](<a href=âhttp://triangle.bizjournals.com/triangle/stories/2006/07/17/focus6.html?page=1]Womanâ>http://triangle.bizjournals.com/triangle/stories/2006/07/17/focus6.html?page=1)</p>
<hr>
<p>oh, and here are 14 more:</p>
<p>[Lung</a> Cancer Support Community](<a href=âhttp://lchelp.org/l_community/viewtopic.php?t=33930&highlight=&sid=4b1c3bb4a43993d5bbc5e20cc75a83ef]Lungâ>http://lchelp.org/l_community/viewtopic.php?t=33930&highlight=&sid=4b1c3bb4a43993d5bbc5e20cc75a83ef)</p>
<p>LTS- do not feel badly about the meandering path of this thread- it is all about you and what you need when you need it; it is also about every one else reading/posting/researching/lurking. You may do other cancer fighters a favour when they see that even LTS the great has negative moments. You may not even be aware of the number of lives touched by this thread, it will go where it needs to go. </p>
<p>The days when you need to put on a happy face for your co-workers, clients, daughter, etcâŠthose are days when you can always vent anger, disappointment, frustration, fury, sadness, joy, whatever, to your cherry blossom buddies! </p>
<p>We are like the parents of teens, as a matter of fact we are the parents of teens and we can take whatever you need to dish out and we will still love you ;)</p>