<p>nymom,</p>
<p>you are right. my cancer-O-meter has been better than medical tests and scans as an early indicator. So, I am really puzzled what’s going on.</p>
<p>Hey, having been married to a Jew for over a quarter century whose mother regularly holds an Auschwitz class reunion, I am allowed to harbor paranoia, as I am an honorary Jew. Simply because you are paranoid does not mean that nobody (nothing) is out to get you!</p>
<p>Thanks for the party news and the update on your tests. Enjoy the party and trust your cancer-o-meter. We’re thinking of you. :)</p>
<p>I had a long conversation with a woman whose daughter is dealing with a stage IV cancer. The daughter is about my age, and the mother is about my mother’s age. She was introduced to me by my best friend’s mother. The idea was for her to talk to me about various clinical trials and treatment options and see whether I can share my research experience and whatever I learned. I was puzzled why the mother, NOT the daughter the patient, wanted to talk to me.</p>
<p>When she started to talk, it became clear the daughter is depressed and unable to cope- that’s why the mother is calling me. 10 minutes into conversation, it became obvious that what this mother needed most is to be able to just TALK. She was crying half the time. I have a stage IV cancer of my own, so she knew that I know what she is talking about, She is so scared. In a way, subconsciously, she wanted/needed to hear me saying things will be fine, and in spite of all this, I am at peace, and I feel fortunate for all the good things in life I was given deservedly or not. What she did not hear from her own daughter - she wanted to hear from me. I don’t think she knew what she wanted when she picked up the phone and called me. But something in me told me that’s why she needed more than anything else. Some assurance for her and her daughter. Not a shallow Hall Mark type pep talk that is devoid of any true meaning. But some form of affirmation that only someone who is in exactly the same position her daughter is able to give her.</p>
<p>My heart went out to her. I wish I could do more, but I tried to give her what she needed most though it was an unspoken and unintended request, which is not a tidbit about next clinical trial opportunity.</p>
<p>After this phone call, I sat down and thought about my mother. My mother does not know what I have. I have never told her. After this phone call, I absolutely feel that I did the right thing. If worse comes to worst, there will be plenty of time at the last minute for her to come to grip with it. There will be plenty of pain and anguish. By not involving her, I spared her all that pain for several years. </p>
<p>Some people might object to my assessment. They may feel that by not telling her, I am robbing her of an opportunity to feel she did what needed to done for me. The problem is, she is 8000 miles away. There is NOTHING she could do, and emotionally, she was never a strong person who can shoulder the burden of other people’s pain. </p>
<p>Every time she bitterly describes her unhappiness about growing old, I feel like shouting “Mom, I hope I have YOUR problem…” But, I am the only one with whom she is comfortable enough to say those things, and I am her safe harbor. I wouldn’t want to deprive her of that ease and freedom to talk about her troubles. If she knew what I had, all bets are off.</p>
<p>All in all, it was a right decision…</p>
<p>I would agree with you, sunriseeast. Sometimes not telling is a kindness. Similarly, I remember reading about a woman with moderately advanced Alzheimers who couldn’t remember that her husband had died. People could remind her – at which point she’d go through the grief and loss every single time – or they could simply tell her that he was on a business trip, which was a lie. I think that the lie was a lot less cruel than giving the poor woman an unending series of “Groundhog Day” experiences about the death of her husband.</p>
<p>Oh, this is such a heart breaking story. Endless Groundhog Day experience of her loss over and over gain. There are times honest is NOT the best policy. </p>
<p>My mom frequently ends our phone calls saying “you inherited good genes from me. You won’t get any awful disease like cancer. Stay healthy”. To that I say “Of course, don’t you know? I never get sick”…</p>
<p>SunriseEast -</p>
<p>I’ve been sporadically following your story and have admired your strength and courage and your writing talent. *No one these days has not had someone they were close with suffer with this horrible disease - some beat it and others haven’t - and I do feel for you and your family. *I’ve never commented because I never had anything more to add that other posters hadn’t already said. *But now I feel that I have to.</p>
<p>*It’s fine that the woman who called you just wanted to TALK - and it’s wonderful that you were there to listen. *Of course she’s scared, of course she wants reassurance, and of course she cried. *But when you’re going through something like she (and you) is, to have someone to talk to who has first-hand knowledge, and, believe it or not, someone who you don’t know well, can be extraordinarily helpful. *Have you spoken to her since? *My guess is that you gave a great deal to that woman.</p>
<p>I think that you are doing your mother a great disservice. *And I’m sure she would be scared, want reassurance and cry. *Although I haven’t read all of the posts, I get the impression that your family presents with a strong front. *But I’m sure they’re scared, want reassurance and cry also. *As a mother, I would feel even worse if this kind of secret was kept from me. *Unless you and your mother have a horrific relationship she deserves to be part of your struggle. Although you say that she could never bear other people’s burden, you NEVER know how a person reacts when the chips are down. *Don’t deprive her of knowing - and maybe even being proud of how you are handling things. *How would you feel? *Even if your relationship with your kids is wonderful now, that can change in a heartbeat, and I’m sure that your would be devastated if you learned after the fact that they kept something like this from you.</p>
<p>Clearly I fell strongly about this. *However, I also know that you have to make a decision that you can live with. *You and your family have my best hopes and wishes for you to lick this horrible disease.</p>
<p>Edit - sorry for the asterisks - I wrote and pasted it from a word processing program which obviously has a glitch</p>
<p>gusaspara</p>
<p>my relationship with my mom is complicated. No. I don’t have a horrific relationship with my mom, but there is more than just the text book case of what should and should not transpire between close family members.</p>
<p>Let’s just say the decision not to let her know is NOT just for her, but also for ME and my brothers who live close to her. Once she knows it, there won’t be a SINGLE day of peace for me. Her overwhelming grief and self pity will dominate the emotional landscape for all those around her, and it will hit my father hardest. My father is frail now(87 years old), and his mood and emotional well being is 100% dependent on my mother’s mood swing. Why should I bring this upon him in the hardest manner possible? </p>
<p>I am working very, very hard to maintain a sense of normalcy for my immediate family (my husband and children) so that their life experience is not consumed by my disease. There is no extra reserve for me to absorb her unending misery on account of my illness and her despondence. Once she knows, I will have to spend hours at a time to calm her down and reassure her.</p>
<p>And, then, there is a clear statement from her in the past that if anything bad happens to any of us, she prefers to stay in the dark. I think she is very honest about her sentiment, and I actually respect her for that: her clear directive makes it easier for everybody. Having been her emotional bulwark for last three decades, I am very confident that this is what she would want. Besides, I am hoping to outlive them. If I do, I will have truly rescued them from years of misery at the end of their life.</p>
<p>So, why would I break this news to her and bring misery for everybody? It’s a truly lose-lose equation.</p>
<p>Now, would I ever want to be kept in the dark if anything happens to my kids? Of course not. I don’t think it’s hypocracy. My children and I have a VERY DIFFERENT relationship - nothing like what I have with my mother.</p>
<p>There is no once-size-fits-all recipe for intimate relationships among close family members. Real life is messy. It’s not an hourly episode on TV where everything is resolved without a loose end when the time is up, and Hall Mark moments cannot be had on demand where everybody resolves decades worth of complications with 30 minutes worth of heart to heart.</p>
<p>I am sorry if I come across a bit too strong. I know you mean very well and you are kind. I am not expressing my frustration at your advice. I am saying what I am saying because there are lots of people who are dealing with complicated life issues, and I wanted to have my two cents in for more nuanced appreciation for each individual situation.</p>
<p>Regardless, thanks for kind words.</p>
<p>Sunrise,</p>
<p>I am not (at the moment) fighting a devastating disease like you are. But I just wanted to add that I totally understand why you are not telling your mother. My mother, who is elderly, sounds very much like yours. She cannot handle hearing I have to go to the dr for a routine appt; discussing a cancer diagnosis would be cruel; she too has made it clear she prefers to be left in the dark about such things. And, you are miles away; you would be drained by hours of phone calls, and the rest of the burden would fall on your father and brothers. </p>
<p>You know your mother. I am confident you are doing the right thing - really, a mitzvah. </p>
<p>I also trust the intuitive wisdom of your cancer-meter. </p>
<p>Best wishes Sunrise, and thinking of you.</p>
<p>sunrise, you’re a wonderful friend for talking to the other patient’s mom. I’m sure she’s very grateful. </p>
<p>I understand about complicated relationships with mothers. I have one. Sometimes you just gotta do (or not do) what you think is right.</p>
<p>OH! ETA: A few years ago my grandmother made the following announcement at Christmas: “I love you all with my whole heart. But, I can’t fix things for you. And it pains me to worry about you. So, unless you need something I can provide, please just tell me good news.” She was 87at the time. She’s now 90. This new “rule” has actually been good for the family.</p>
<p>^Great idea from your grandmother, DB. I’m going to steal it.</p>
<p>Enjoy the party, SRE!</p>
<p>DB-love that straight talk from your grandmother. I, too, will steal it. Most elders do seem to get to that point, but don’t necessarily articulate it. I hate seeing elders over-burdened so that others, theoretically less frail, can vent. </p>
<p>As to sharing or not, it is a very personal decision. I have seen many compelling cases for silence, as well as reasons to share. This is probably a “trust your gut” and experience thing. I was unable to spare my aging mother the reality of 2 simultaneous serious illnesses in my family (they were local and there was visible evidence as well as serious impact on my availability). It meant a lot to her to know and yet it really took a lot out of her to worry. I did minimize and finesse what I could, but there was just a bit too much to take in regardless.</p>
<p>Sunrise- your wisdom on all things is to be respected. Thinking of you as you anticipate this special celebration.</p>
<p>Actually, I did tell my mother about my H’s medical scare. Only because it was resolved very well.</p>
<p>He developed lung problems starting around the time that I was diagnosed (I don’t think this was a coincidence). Lung problems run in his family: his sister had to have a lung transplant surgery about a year ago. During last several months, it became progressively worse. The doctors couldn’t figure out what was the cause. In all likelihood, they said, it’s IDP (ideopathic XXXXX - some fancy name for “we don’t know what it is, but it’s bad and there is no treatment. we just watch. Perhaps you have 5 years” kind of medical problem).</p>
<p>Lung biopsy was in order - if it’s not that scary disease, it may be something else they can treat, though the odds were overwhelmingly high that it’s IDP. The original doctor thought that they would have to take close to 10% of the lungs out to get an accurate reading to see exactly what it is. My H and I decided that we are not there yet: if indeed it’s that scary disease, taking 10% of the lungs out will simply further deplete what is rapidly dwindling resources (remaining healthy lung tissues). Last several months, his conditions got much worse, and he also got a second opinion that said only tiny fraction of the lung tissues are needed. So, he had a surgery to take a piece of his lungs out. Last week, the results came back. It’s NOT IDP. It’s treatable, and though some permanent damage was done, the condition is largely reversible. He won’t be able to climb everest but this won’t the cause of his early demise.</p>
<p>I have never been happier. Truthfully, I was much more worried about his condition than mine. In fact, if I had to choose between his good biopsy results and my remission, I would gladly choose the former any day of the week, every week. </p>
<p>I told my mom about this only because it had a good ending, and only after all was resolved in the best possible manner. Part of my sinister desire was to let her have a little bigger perspective, that she does not own the entire world’s worth of misery, and there are a lot of reasons why so many people would gladly trade their places with hers and she has a lot to be thankful and grateful for. Whenever she complains bitterly about her aging, I feel like shouting “my most heartfelt desire is to have your exact problem”. </p>
<p>You know, the crazy thing was, H’s surgery was a day before my “spa” session at MSKCC. The night before his surgery, we were joking about who’s going to reach the finish line first (really, really, really black humor). And, both of us felt profoundly, absolutely grateful for the fact that somehow, against all odds, we found each other though we were born on opposite sides of this world, and built a life that produced two truly amazing, good kids. No matter what happens, these two amazing young adults will carry our essence going forward. I know looking from outside, this couple is truly in trouble: both dealing with life threatening medical conditions, but we were deliriously happy that night. Some might say this is just delusion and rationalization of the continental scale. Well, whatever it is, if we can achieve this without some psychoactive drugs, so be it.</p>
<p>I will have to wait till the next scan to see whether the cancer is returning or not. I am ready for all possible scenarios. If it came back, and I need to start all over again with a different treatment, so be it. I am not afraid. I am quite at peace. My primary goal is not necessarily a long term survival (though I will do my best to achieve it), but to leave the legacy that fits the essence of who I am. Somehow, so far, my cancer did not extinguish the life force of this family. If anything, it became a shadow that accentuates the gorgeous contour of a master piece sculpture. The darkness as part of the harmony of light and shadow can be a beautiful thing. The other day, S1 called and started to talk about his course selections for the next quarter, and out of the blue, he said simply, Mom,I am very happy these days. And, that meant so much. My cancer did not become the darkness that snuffed out any trace of light in the room. Rather, it became that shadow that gives the elegant nuance to the contour of the beautiful sculpture. This is the legacy I want to leave behind. So far, I am winning.</p>
<p>And so far, we are lucky to hear you speak.</p>
<p>Beautifully said, Sunrise. My mother kept a secret from me (which I learned from my father after her death) - and I’ve been biting my tongue when you said you are keeping your mother in the dark - I’m all for honesty but from your explanation, you are doing the most selfless caring thing you could do. I’m thinking that was my mother’s intent as well. I’m really getting reconciled to that idea - I’m looking at her secret not as a lie (my first angry reaction, “who is this person I am grieving, I don’t even know her” yada yada) but as a kind of gift to me.</p>
<p>just bumping this thread so it doesn’t get lost…thinking of you, Sunrise…I hope the party is a huge, fun success…and that your numbers and your scan are in the healthy range.</p>
<p>hello!!!</p>
<p>Yes, the party was an unbelievable success. The look on my H’s face when he entered the room was worth anything… He really, really, really did not know at all that I have been hatching such a treacherous plan for last six months. I am afraid he will never trust me again :)</p>
<p>It took a few moments for him to catch on what was really happening. To see all the shady 
characters plucked out of the far flung alternate universe called his ignominious past was a shock to him: a very moving and pleasant shock. There were people who flew in. There were people who drove 15 hours.</p>
<p>The room was most elegant. The view was fantastic (the room opens into the estuary heading into the Atlantic sea). Food was superb, and the staff gracious and efficient. More than anything, the room was full of friends and family who really loved H, and he was truly moved.</p>
<p>Later he told me that this is the second party that was thrown for him - the first being his bar mitzvah, and it was mostly for his parents and their friends (plus a few of his own). Remember: I couldn’t stomach the idea of ceremonies and events so we got married at a courthouse. he said, this was such a perfect party that he does not want any other party for him because nothing is going to be better than this.</p>
<p>After dinner, I asked guests to come up and share the quintessential AM (my H’s initials) stories. It was a great deal of fun to hear the stories. I started with mine. The most moving was from S1 who concluded his remarks by saying “I believe having him as your friend makes you all very fortunate. As for me, having him as a father makes me feel like I won a lottery”</p>
<p>The room was full of good will, grace, love and appreciation all around - shared by the guests even among themselves for each other. If I were to capture a perfect moment in life, last evening was it. </p>
<p>Well… As for me, I get a scan tomorrow. The blood test results were not good lately, so I am bracing myself for some unwelcome news. It could be that the blood test results were false alarms, but the odds are higher that something is going to show on the scan. I am mentally prepared for it, but still, it’s not something that one looks forward to. I have done intense research last week or so, I have prepared a dossier of research results for me to discuss with my doctor. I would like to discuss some treatment options they are using in Europe with good results but for whatever reason have not taken roots in USA. </p>
<p>In spite of all this, I feel truly blessed in so many ways, and cancer was still a net positive life event for me. Without it, I would not have thrown a party like this. Partly, what motivated me to do this was because I felt the need to let H know just how much I love him and owe him, and you know, there might not be enough time for me to tell him in so many words… Another reason is, if I don’t emerge as a lucky survivor, I want my family to remember the time of my struggles as a happy time in our life together - the spring time when all the beautiful things blossomed, not the bitter cold winter of an emotionally barren landscape. The evening like this is what I want to leave behind… This is what I want them to carry forward.</p>
<p>Sunrise, I’ve been reading this thread all along. I’m so happy for you that you pulled off this party for you’re husband, your family, and for yourself. Thank you for taking us all along with you for this ride. </p>
<p>I pray that this week brings you good news.</p>
<p>Ditto. You are an inspiration to many, sunriseeast!</p>
<p>your writing is as graceful as your screen name. Your son toasting his Dad at a wonderful party that you conceived and carried out is a great read. Only the second party thrown in his honor? you put me to shame thinking about how I could make memories for my own husband and set an example of warmth and of embracing life and celebrating my husband for our sons. I will be thinking of you re your appointments and your scan tomorrow.</p>
<p>Haha, faline2. yes, only the second party thrown in his honor. Because his parents were not the “event organizing” type, and NEITHER AM I! In fact, my two kids have a standing offer from me for an elopement bonus. (actually, I have had a party thrown in my honor. Those close to me have been warned not to even think of it as I am allergic to events and ceremonies)</p>
<p>But then again, after yesterday’s event, I am emboldened, and I offered to my kids that I am ready to organize their wedding party. Neither took a bait ;)</p>