<p>more prayers from me too LTS. Keep Calmom’s wonderful post about her own experience in mind. You’ve given your daughter the best gift ever. Hang in there.</p>
<p>Delicate Arch,
You’ve said what I feel so beautifully. Ditto, ditto, ditto. In Judaism, we have a prayer called the Shehecheyanu, where we thank G-d for getting us to this point in time. I’ve been saying it a lot this senior year. It is a joy and privilege to see how my kids have grown and matured. I got to see DS1 give a presentation to colleagues and professors this fall and I sat in the back with tears streaming down my face. It was such a gift to witness, and while others may question why I left my job, I have absolutely no doubts. It was to help these kids get to this point. My “pay” for this work is absolute joy.</p>
<p>When I was dxd almost six years ago, I just wanted to get both kids launched out of HS. I told the docs “anything beyond that is gravy.” I was wrong. The gravy is here. Now. And it’s pretty darned delicious.</p>
<p>Did anyone else hear the great On Point radio show today with cancer survivors and their “bucket lists”? Two of them had advanced lung cancers, one had liver cancer and all had far out-lived their prognoses and were still going strong.</p>
<p>I agree about the kid sentiments above. I am so relieved as my son hits each milestone. A successful launch into college did bring a sigh of relief. None of us knows how much time we have left and knowing he’s a step closer to independence is wonderful. The joy of raising him has already more than “paid me back” for the work–it is a job I’ve loved every step of the way.</p>
<p>latetoschool: How was your trip? Are you settled back in DC? Thinking of you.</p>
<p>Yes, LTS - waiting for that “safe arrival” call.</p>
<p>Hope things went well on your trip. Positive thoughts and hopes are coming your way. Lorelei</p>
<p>Call collect, we’ll deny the charges, and we’ll know you’re in safe and sound!</p>
<p>LTS, I’ve been quiet of late but read every word. When you get to D.C., are there any support groups for your D or you through a church or temple? Some have “caring committees” or people who might reach out. What might be corny for you might be of interest to your D, or vice-versa. If they want you to join, that’s not so bad either, as a way to gain entree into the life of a community and professional help of clergy. I wouldn’t be stopped by any doubts about theological beliefs, either. It’s a question of finding community. </p>
<p>THe hospital has chaplains, too, of every faith and if you put word out in their direction perhaps they can help you find a community to join. If you’d say to yourself, well what do I say, I just moved here because of a medical crisis and need some support? Well that’s about exactly what you’d say, and what they can respond to if they’re a decent community. Or since you mentioned a rabbi long ago, perhaps he could call for you and find a contact, but understand that’s not even necessary; it might just be more your style to go from recommendations, than cold calls. Hospital chaplains, though, also know the community in each of their own faiths and can recommend.</p>
<p>Perhaps the hospital itself has support groups, on a more secular level, simply for medical and emotional conversations to support your D in DC? I think that it might be nice for you if you felt she was not entirely alone in a new city. Naturally your D wants to be most with you but if she had others to turn to, that would also be important and perhaps helpful. Sending love and caring thoughts to you both.</p>
<p>I’ve been lurking on this thread for several months and have remembered you in my prayers several times. No words of wisdom from me, although I’ve appreciated much that has been written here. I’m sure I’m not alone in saying that we’ll step up the good thoughts that we are sending towards DC as you move and undergo further treatment.</p>
<p>I really, sincerely appreciate each and every post. Thank you all so much. Thank you especially for the prayers - I firmly believe that God listens, and hears. I believe there is a reason for all of this - no idea what, but I am sure there is some reason and a plan.</p>
<p>There is also a great deal of wisdom and comfort in all of your posts; I am going to re-read them again over the weekend when it is a bit quieter for me.</p>
<p>We did arrive in D.C. yesterday afternoon. My daughter drove every single one of the over 1,000 miles, not permitting me to take the wheel even one time. Perhaps that’s because the Stang is so much fun to drive lol??? Actually, I was in no condition to drive, and, for the first time since diagnosis, I lost my appetite, and actually believe I felt the process of giving up begin. My daughter made me eat many times Tuesday and Wednesday, and, today, I actually felt my appetite return and my spirit is back. I have read about the condition of not being able to eat, and I never understood it until it happened to me. It’s really scary. </p>
<p>So, we see my Virginia oncologist tomorrow; then, my daughter flies back to Miami. She expects to return here by next weekend.</p>
<p>Monday, after discovering discrepancies in statements vs. reports, we/I made the decision to fire my Miami doctors. One of the issues was rather significant, so…</p>
<p>My daughter and I went to my office this morning, and then we walked over to the White House. I like to walk over there; it makes me happy for some reason. We stood there staring at it, and something made me tell her that she might wish to live in it some day. She told me if she does, she’s going to order it painted a different color…</p>
<p>Thanks for checking in, LTS.</p>
<p>Hm. The Green House? </p>
<p>latetoschool: Shock can cause a loss of appetite (it has happened to me), only I wished it had stayed! Haha.</p>
<p>You did have a shock, so I don’t think this is medically significant. Glad to hear it’s returned.</p>
<p>I am so glad your daughter could drive you; you got to harness your strength and glad to hear your spirit returned too.</p>
<p>It sounds like those guys deserved their pink slip.</p>
<p>I am praying for you and your daughter as well and several others on these boards.</p>
<p>I don’t believe in God, but I do believe in prayer, and I have seen it affect outcomes.</p>
<p>Somehow it makes me happy to think of you walking at the White House.</p>
<p>LOL, then it would not be “The White House”! I am very glad that you both had a safe trip to DC.</p>
<p>Only good thoughts for the best, and I am praying for you too.</p>
<p>LTS - have fun in DC. And let us know how the new doctors do. And here’s to cherry blossoms:).</p>
<p>
</p>
<p>Hmmm . . . if this paragraph were a piece of music (I’ve been reading more of Oliver Sacks’ Musicophilia lately), it might be heard as melodies of continuity and change in counterpoint - sort of like the way your and your daughter’s lives will continue to sound, I expect, for some time to come, no matter how all of this ultimately turns out.</p>
<p>(Speaking of Oliver Sacks, there’s a quote that he’s very fond of, by the German Romantic writer Novalis, that I like a lot, too [so long as you don’t ask me to try to explain precisely what it means]: “Every disease is a musical problem; every cure is a musical solution.”)</p>
<p>Mythmom it may well have been shock. I spoke to another physician that I consult with for nutritional stuff and he said the progression report makes no sense at all - but - it does make sense to me (sclc responds well then gets very smart very fast, tricks the drugs), so, I’m not disputing the report. </p>
<p>We did have some difficulty though with the oncologist - for example, he received the scan reports before I did, and, during my appointment Monday, he told me that - GOOD NEWS - the original cancer in the lung is “all gone” - it’s taken care of. I then asked to see the report, and, the very first line of the report very clearly reads “significant uptake and hyperbolic activity in the right lung that is increased from last report”…etc.</p>
<p>So, I asked him to please reconcile his statement that “the cancer is gone” with the radiologist’s report that says what it says, and, confronted and confused, he said “it’s just semantics” and then he said “I’ll have to talk to the radiologist”. </p>
<p>Can you imagine if I hadn’t asked to see the report, and just accepted his statement “the cancer is gone”? …that was enough for me…the oncologist’s handling of this was far more shocking and disturbing than finding out about disease progression…</p>
<p>Ah, so good of you to mention the cherry blossoms, Alu! One of the best times of the year in DC. (Ooooh… I just bought a little plot of land in Second Life, maybe I’ll plant a bunch of cherry trees in bloom and we can pretend we’re visiting you in DC!)</p>
<p>It was the right move to fire that oncologist. It’s hard to imagine whatever he could have been thinking.</p>
<p>More thoughts and strength are winging your way from the other side of the continent, LTS.</p>
<p>latetoschool, I’m glad you made it to DC safely. And you made the right decision when you fired those docs!</p>
<p>Epistrophy, speaking of music? My daughter and I shared our iPOD music over those 1,000 miles - runs off the Mustang’s sound system. We discovered that one should NOT listen to Jeff Buckley’s “Allelujah” while in a state of emotional duress…stunning, hauntingly beautiful music, that. </p>
<p>As to the WH, she and I have walked over to it many times over the years when I have been here on business and she has flown up to visit. She asked me today if I remembered the day we stood in front of it at the beginning of the invasion of Iraq, and there were visible snipers on the roof. Or the other time we convinced the grounds police to let us pet the dogs. Or the time we made friends with the mounted police and got to pet the horse. Or the time we watched the war protesters. Or the time we took the pictures for the Asian tourists. For some reason, the WH is this thing that calls us at odd times, we don’t get it, and we don’t question it either, we just walk over and stand there and have whatever is that visit’s experience…so, I totally, completely “get” your post.</p>
<p>LTS,
We shall walk beneath the cherry blossoms together this spring. It’s usually the last week of March through early April. Be there – aloha!</p>