<p>LTS, I’m so sorry that you had a bad day. I’ve been thinking of you constantly and praying for complete healing for you, and especially for your peace of mind. Always remember that someone is going to be in the top 1% and that someone might as well be you. I imagine the rabbi is going to help you with perspective and probably some laughter, too.</p>
<p>So sorry you had a bad day–I don’t have anything useful to add but just wanted to let you know that I often think of and pray for you.</p>
<p>LTS, it’s okay to have a bad day. It’s okay to have a day where you are down, or angry, not your super positive self. After all, it’s really not fair. I’m glad you are leanning on people, and looking for a therapist, and talking to the rabbi. It’s good to vent to someone, so it’s not all pent up inside you. </p>
<p>It is tiring trying to show everyone how positive you are. And after awhile, the folk yelling attitude is everything I just want to punch. My husband was getting depressed, and one friend said I need to pull him out of it, as if he’s not positive the treatment won’t work. I had to stop her. “You think the reason he got lymphoma in the first place was because he wasn’t positive? You think he relapsed after everyone was sure because of his fast response to treatment that he would be cured was because his attitude wasn’t up enough? You think the reason the bone marrow transplant and high dose chemo didn’t work was because he didn’t have the right attitude?” My husband was the picture of positive thinking throughout all of this, and yet his cancer came back. And now, that he’s in a clinical phase II trial,sometimes he’s admits this is not a sure thing. Yes, it’s easier to live with people who have a sunny positive attitude, even when it’s entirely unrealistic. Attitude helps make whatever amount of life there is left more worthwhile. And I know people are trying to tell us there attitude is something we have control over to make us feel we can control something. But it sometime feels like they are blaming us for not being positive enough. Sometimes cancer is not something we can control. Sometimes, despite everyone’s best effort, it just doesn’t work out. In the end, there are people with amazingly positive attitudes that will die, and there are negative gloomy guss’ that will live. And yet, sometimes, there is also that miracle.</p>
<p>LTS, I have been following your posts and I send you love and prayers for strength through this scary time. About your wig feeling terrible, I wore a soft, elastic cotton cap between the wig and my bald head. That felt a lot better–my wig was a good one, but still scratchy in the extreme without the cap. If I let it, my hair would start to grow back between chemo treatments, and the wig would then be more uncomfortable. I kept my head shaved until after my last treatment.</p>
<p>LTS, I know several women with shaved heads who do NOT have cancer. Admittedly, they are all in their early 20s and live in Portland, OR (one of them is my daughter)… While you say you don’t want your co-workers to know you have cancer, I would suggest that it might make your life much easier if you just let people know or wonder or whatever, and go with comfort (soft hats, scarves, nothing), rather than wigs. The women I know who have done that have found it liberating. And it puts a human and public face on cancer–people begin to realize just how prevalent cancer is.</p>
<p>UCDAlum, I am sorry about your husband. Thank you for the view from the other side, that constant pressure to be positive can be a burden. I hope that the trial brings that miracle.</p>
<p>LTS-</p>
<p>I’m making an assumption here, but I’ll wager that all those who are sending PMs will not think any less of you if you don’t have time to respond individually to each and every one. This is not the time to heap any additional pressure on yourself. Now, if you find you enjoy the time you spend responding and it is not keeping you from other tasks or rest that you need, well, that’s another story.</p>
<p>Sending a warm hug and smile and wishing you a better day today. </p>
<p>Stupid cancer.</p>
<p>UCDAlum,
Sening many hugs and healing to YOU. Caregivers can have it even tougher than those of us who are ill, it seems to me.</p>
<p>LTS – Personally, I think I’d scribble “CANCER SUCKS!” on my bald head and then cover with the wig (or not). Could be quite therapeutic. Or let your friends sign your head – just like a cast! ;)</p>
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<p>This was my experience as well; in fact, I did not even tell anything to my parents until several days prior my surgery, although it was hard to pretend that life goes as usual. Speaking of which, LTS, taking care of yourself should be your highest priority, but I wonder if your daughter also needs some support? She must stay strong and brave when she is with you, but I am sure that she also has some pretty bad days. Support group or a psychiatrist might be an overshoot, but does she has anyone to talk to?</p>
<p>LTS, Just remember, there is no cancer out there that someone has not been cured of. That depressing statistic you found is by definition based on dated info (kinda like looking at a 10 year old issue of USNews for college acceptance stats!) and does not refer to people getting the benefit of the current trials and treatment today , nor does it take into account such things as the fact that women and nonsmokers (Dana Reeves notwithstanding) do better than other groups of patients. </p>
<p>Actually, due to people like Dana Reeves in the news, and the upswing in the number of female nonsmokers who are getting diagnosed, there is a lot more attention being paid to this illness and the fact that it is not just male smokers who are getting it. BTW, even though Reeves was not a smoker, some theorize that she was exposed to a lot of second hand smoke in the nightclub venues where she used to sing.</p>
<p>Speaking of wigs, I have a friend who did not tell many people about her cancer or the fact that she was undergoing chemo. At the same time, she decided she would have some fun with people and opted for wigs as different from her own conservative hairstyle as you can imagine. She showed up one day with a short spiky rocker girl wig and entertained herself by seeing what other people would and would not say to her about her new look! I still laugh when I think about that! </p>
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<p>I’m so glad. That really is great news.</p>
<p>USDAlum82, I am sincerely very sorry for the challenges you and your husband have been facing. I will keep you in my thoughts, prayers, petitions, and whatever force and power of good will I can send your way, I will do so. I hope the trial is very, very productive. </p>
<p>I do believe that attitude is critical, and, given today’s events I certainly also believe that it is also critical to be human, and to give negative feelings a release, and that, sometimes it is just simply impossible to be 100% positive. </p>
<p>Today, briefcase in hand packed with hours worth of work I arrived for my 8:00 a.m. chemo appointment at 7:20 a.m., which had to be onsite at the hospital because of some overflow snafu at my oncologist’s office, but which was still o.k. because the outpatient department of the hospital is literally right across the walkway from his office. </p>
<p>Anyway, some administrative dot didn’t get connected to some other dot, apparently owing to the holiday yesterday, and to the paperwork that the chemo nurse didn’t file, and so, the hospital did NOT have me scheduled, and even worse, they told me I would have to wait until 9:00 to see if they could straighen some thing out with the business office to connect the dots, and then and only then could they even tell me if the appointment could even be kept. So would I please go sit in the waiting area; they will update me at around 9:00. Oh, and I did realize I arrived a bit early, didn’t I? I do not really know how these things work but I had the impression I might not be getting chemo after all today. </p>
<p>I told them I would wait outside, which was ten steps away from the outpatient admitting desk. I like to be outside, regardless of the weather and I cannot stand to sit in waiting rooms inside. Anyway, I go outside, the benches are full so I stand by the newspaper stands, and I think, hmmm, what to do with 90 minutes? I stare at my blackberry, and my personal cell phone, and my briefcase, and my laptop, and think, well, there’s some problem and if I cannot get them to straighten it out it could be a problem for my treatment. So how to solve by myself? Let’s see, I can do A, B, C, D, or E, any one of those things will likely solve the dots problem, who should I call first? Oh, but, wait, it’s too early for me to do those things as no one will be at their desks for at least another hour yet. I stare at my personal cell phone again. Maybe call a friend for support? Oh but wait, this one’s in heavy traffic, this one’s at home with small children, this one has an early meeting, this one I know for a fact isn’t out of bed yet, this one’s in Texas, this one’s in California, and so on, and, I will not bother my daughter at work, and, at the end of the day, not a single one of these people can do anything for me anyway. I check my blackberry, too early for a lot of email. </p>
<p>So I decide to sit down on the ground next to the newspaper stands, just to sit for a minute and decide what to do next rather than just let 90 minutes burn away or worse leave the fate of my day in someone else’s hands who didn’t get it right the first time, I’m sure I’ll think of something I tell myself, and, before I even could try to decide, I started to shake, then I started to cry, and then I REALLY started to cry, and, I just simply could not stop crying. The more I tried to stop crying the worse it got. Just totally, completely lost it, sitting there on the ground beside the Miami Herald newspaper stand, my laptop and briefcase there at my feet and a hat and no hair because I couldn’t bring myself to wear the wig this morning. I am sure I looked like the most hopeless third world orphan. </p>
<p>Obviously this drew some attention and some important people in suits came and asked what was wrong and took me inside (I could barely articulate the answer to THAT), and some even more important people got involved including my oncologist, and the dots got connected and someone got in trouble - actually several someones got in trouble because it was their error (though I would not have wished that anyone get into trouble), and I did end up getting chemo today but I would end up crying for four hours straight, just literally could not seem to stop. It was as if everything - and I mean everything - came crashing down all at once and it was just simply too much. </p>
<p>Some good things did happen today too and I should focus on those good things: the rabbi came as promised and spent over an hour with me; I cried through most of our discussions and it did not bother him. He gave me some very, very, good, powerful empirical information. The chemo went well and outside of crying so much I feel fine and am having no physical challenges. </p>
<p>Also made very significant progress today re the appointment with the oncologist suggested to me in PM by the CC member. After today’s chemo daughter and I ran around to all the different places getting copies of records made and sent, and I should have a date on the calendar tomorrow. I had some questions about his philosophy AND the cancer center’s philosophy on treatment for this after reading several abstracts from Chest and the Journal of Oncology, and I wanted some clarification, and, while I don’t have everything I am at least inching it right along.</p>
<p>I do agree that caregivers have a really, really, very difficult road. I actually have another appointment Monday with a totally different cancer center, this one in Washington, and, my plan is to compare this with the one where the CC member here gave me the physician recommendation. The city where the CC member here helped is my first choice, and, that center is very highly ranked on USNWR. But Washington is very important to me for a lot of other reasons, and so once all appointments are complete, I am going to make a decision, and I am going to leave immediately for the city of choice, unless I decide to stay in Miami (unlikely but could change). I already have residences in both of those other cities, and all I have to do is go. Over the weekend, I explained this to my daughter, and, told her to stay in Miami, etc., etc. and she simply refuses to do so. She told me that if I decide I’m going to Timbuktoo because that is what I need to do (is there such a place???), she is coming too, period, end of discussion. She will stay behind a week or so to manage movers etc. but that’s it. I raised issues of her social support network, her new career trajectory, her friends, and even her boyfriend of a year’s duration, and, she won’t hear it, she tells me she’s coming with me no matter what, and furthermore I have absolutely no say in the matter. I do not think that is the best idea in the world but that is what she says to me, and whatever is the final decision I need to make sure there is some support for her - but equally importantly the support network needs to be more evenly distributed so it’s not mostly her. </p>
<p>The rabbi’s answer would be LIVE, and then it’s a non-issue. He reminded me today re “why to” relevant to “how to”, and told me he’s sure I want to see her get married, have children, etc., so, focus on living… </p>
<p>UCDALum82, I am thinking of you tonight and wishing you every single good thought…</p>
<p>LTS, I’m so sorry that your day started off so horribly, but so happy to hear of the love and support your D is showing you! What a wonderful daughter, and clearly, what a wonderful job you must have done/are doing as her mother! Stay strong!</p>
<p>I should add in a bit of trivia - maybe this makes some sense to someone else who might someday be researching the same thing, maybe not. The cancer center I’m considering in Washington (might as well name it) Georgetown, does not appear at ALL on USNWR’s rankings of top cancer centers. I asked them (the new patient people at Georgetown that is) to please explore for me why, as it isn’t very apparent or logical to me. I can understand and am totally o.k. with it if they’re not ranked like MD Anderson etc. but if they don’t appear at all I am worried, but confused because their doctors who specialize in this seem to be very highly qualified.</p>
<p>They have been researching it for me for a couple of days, and they called me today on another matter to say that they have a partial answer and one of their PR people is going to call me back later in the week with a complete explanation - it has to do with the issue that they do not have a high enough number of Medicare (or Medicade???) discharges to be included in the report. So I asked, is that because they typically do not accept these patients, or, is it because these patients do not try to get care there, and what’s up with that, and what’s up with the USNWR rankings anyway if one segment of patient is not included? Anyway, they don’t know, and the front line people I’m dealing with are puzzled themselves, or at least that is what they tell me.</p>
<p>LTS, I haven’t chimed in here before because so many others have said what I would have. But I do want to tell you that you have done an amazing job in bringing up such a wonderful young woman as your daughter. That kind of caring and empathy and stouthearted determination to be with you no matter what is rare in this world. Many, many blessings to her and to you.</p>
<p>Thank you for the kind words re my daughter, but, she was sort of born this way, her outcome had little to do with me, at the end of the day - in any event, I am worried and do not wish to train wreck her, however, she told me today she spoke with her employer (she started her new job two days after I was admitted to the hospital via the ER and so they are aware of her challenges), and, anyway, her employer told her that they will make a transfer happen ASAP to whichever of these two cities I chose, if I make such a choice. So I am relieved that at least she will not totally lose everything by following me, but, still, she proposes - no - insists - on giving up way too much, IMO.</p>
<p>Oh sweetie, I wish I could just wrap my arms around you and let you cry. Or at least fix you a nice cup of tea (my family’s cure for everything!)</p>
<p>You are so brave – and that will carry you on when you don’t think you can go any further. You know you are doing all the right things, and that’s all you can do – fight the good fight! But sometimes, I believe, you just have to let someone else be strong for you. I’m glad you are open to letting your daughter go with you, wherever this battle takes you. It’s important to let her do what she can. There will always be jobs, mortgages, car repairs or whatever, that obscure the meaning of life. But it’s always about the love we carry with us – I’m happy you will let your sweet daughter give you that love. But it’s also a gift for YOU to allow her to help – whatever happens in life, it’s usually the things we DON’T do or say that we regret.</p>
<p>I think tears are good for the soul. Maybe you can imagine the tears washing away the toxins in your body – might as well use them, right? You know I’m praying for you every day, as are so many on this board. </p>
<p>In the meantime, here’s an Irish blessing.</p>
<p>“May the sun shine, all day long,
everything go right, and nothing wrong.
May those you love bring love back to you,
and may all the wishes you wish come true!”</p>
<p>I am glad that your D wants to go to Timbuktoo and everywhere else with you! It’ll be good for both of you.</p>
<p>Would that we could all do more than cyber-hug you through this. I am so sorry that you had these hours of pain and tears, but clearly you reached the folks who needed to help you today, BRAVA! Your daughter is a marvel, and she is doing absolutely the right thing…she can never retrieve this time with you if she gives it up…she will have no regrets or remorse…let her take care of her own heart in this way. Bless you both. Lorelei</p>
<p>Ah LTS. FWIW, I don’t know you but I feel love for you. I could see you, so vividly, crying. You who are always apparently in charge. I think you needed to cry and now just drink a lot of water:).</p>
<p>For your daughter. You are her mom. You are central to her sense of self. The most important thing is that she does now what she believes is right. She needs in her life to never have regrets about this period.</p>
<p>Keep telling her she doesn’t have to come. That’s good. But realize that for her this is the right thing.</p>