my diagnosis of advanced cancer: how to help my kids

<p>I reconnected with an old colleague of mine at Bell Labs. We used to a lot of things together back then. She moved away, and we lost touch for a while.</p>

<p>Upon hearing what I am going through she said “Oh, I am so glad you told me. It would be horrible to hear from other people that you died!” I had a really good laugh out of it. This has to be included on the top ten list in a relevant category. I was not bothered by her comments. She has always been a bit self absorbed in a very innocent way - the way little children are self absorbed. </p>

<p>I think I will text her on my death bed so that she hears from my directly. When I shared this observation, a close friend of mine asked “what happens if she dies first?” A good question! Ha ha. Another friend shared this: when her brother died, one of her colleagues had this little gem to share “I perfectly understand what you are going through and how terrible you must feel. Last fall, my dog died”. Kinda hard to beat this one, right?</p>

<p>On a more serious note: it looks like the experimental off label drug is not good enough to help me in a meaningful way. While on this drug, the cancer blood marker has been rising rapidly. So, finally, I have no choice but to go back to the pen: time to bring out heavy artillery. Really wanted to postpone it till at least after the summer. </p>

<p>I may lose hair again. Don’t mind for an aesthetic reason, but it’s a harsh reminder day in and day out. Besides, when I visit Asia this summer, this is a problem. I hate the wigs, but it’s a society that is very harsh against any sign of being different from the norm, and I don’t think I can get away wearing a cap in summer the way I did here in NJ without constantly having it as a major “discussion” point. Besides, during this trip, I am finally planning to share my condition with my mother, and I am afraid she is not going to be able to handle the daily reminder of my mortality as evidenced by either a wig or it has always been that way last 30 years. </p>

<p>I get to the heavy treatment next week. Meanwhile, I have been having several bouts of bowel obstruction. That was painful - literally! I was almost hospitalized but escaped the jail term since the obstruction cleared on its own by the time they were going through the admission process. I have singing bowels now. Really loud gurgling noises all the time. A veritable full orchestra. Are you grossed out yet? I always wanted to be an opera singer in next life time, and my bowels beat me to it. So, I am not fit for polite society. Perhaps, I can get a temp job in a freak show.</p>

<p>Humor aside, this latest set back marks the fourth regimen I failed on since my recurrence last September. I know what this sounds like on the statistical column. Yesterday afternoon, I sat down and thought about what now? By now, I have an official authorization to feel depressed and down by anybody’s standard. However, I could also think about all that I was given - the uncommon privileges I was showered with. A good career that let me reach a fairly meaningful position without compromising my values and mortgaging my integrity. Two great kids who are thriving in spite of all this. A most loving husband. Great friends. Many people don’t get these in their life time even if they live to be 100. So, I chose to feel blessed - and it was not an heroic act achieved with a grim determination. Easy enough when I put all the “negatives” and “positives” in separate columns. There was such preponderance on the “positives” column. </p>

<p>So, I am gearing up for the next round of this saga. I hope I do well. Losing four rounds in a row: this has never happened in my life in anything. A humbling experience, I must say. You may think it would teach me humility. Instead, I get feisty and rebellious. Still a lot of good things happening this summer - visits with friends. A first class trip (remember that?) to Asia with my son. A lot to look forward to.</p>

<p>Sounds like you have unusual…peristalsis.</p>

<p>There was a limerick I remembered (ok, half-remembered and had to google cause my memory’s probably not as good as yours): I sat next to the duchess at tea, it was just as I feared it would be. Her rumblings abdominal were simply phenomenal, and everyone thought it was me! </p>

<p>May you only hear good news, and if not…may you find humor in the bad.</p>

<p>Sunrise – D’s beloved math teacher went on and on during back-to-school night about how upset she was that her dog had died, including pictures on screen of the beloved dog wearing a crown, and then ended this several minute long eulogy by mentioning that her dad had also died the previous week. You could see jaws dropping, though the parents whose kids had had her previously weren’t in the least surprised. (She was a fabulous, fabulous teacher – but quirky.)</p>

<p>Sadly amusing true confession regarding the odd comments people make, but a few years ago my Dad died, then a few weeks later an aunt died, then a few months later a brother in law died, then one year to the week of my Dad’s death, our dog died. I am not sure if it was the accumulation of unspent emotion or missing the little things every day, but the dog’s death hit me the hardest. It was the most stunning on a daily basis.</p>

<p>Oh my, telling your mom, wow. Before I got to the sentence about telling her, I was reading about wearing wigs in Asia and wondering how in the world you could keep your diagnosis a secret whilst wearing a wig! That will not be an easy conversation, but even more difficult could be the phone calls & emails & letters requiring you to support her in this time of need (hers?) Hopefully she surprises you with new depths of character!</p>

<p>You are amazing, thank you for sharing your journey through this!</p>

<p>sunriseeast - I just found this thread by viewing “latest posts” on the left, and wanted to say your posta are awesome! Hope you have a wonderful summer, especially on your trip to Asia with your son. Enjoy!!</p>

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<p>The phrase “the patient failed treatment” really needs to be purged from the medical vocabulary.</p>

<p>You haven’t failed anything. It’s the treatments that failed. You have been working hard to keep your disease under control and live your life at the same time.</p>

<p>I agree with Marian. “Failure” should be removed from your vocabulary!</p>

<p>sunrise: I’m sure that I’m just one of many people here who follow this thread but don’t post frequently. You have so many cheerleaders (not that you seem to need cheerleaders very often). </p>

<p>I was going to comment on your choice of words also, about “failing.” Indeed, it was the treatments that failed, not you. You are the fighter, the battler. And I know you are not giving up. So forget the “failing.”</p>

<p>Your posts also remind me of someone I knew who created and ran workshops on “Humor, Creativity and Chronic Illness.” She ran them for doctors, nurses and people with chronic conditions (who she refused to call “patients” because, as she rightly said, they are only patients when they are in the hospital being treated for something). She was a positive person, like you, who believed, above all, that knowledge is power.</p>

<p>Enjoy your family and best of luck with your mom. I hope she surprises you. And please tell us when you are leaving for Asia. Otherwise, we will all worry :)</p>

<p>Want to wish you a very good trip back home. I am sure it will be very special to share it with your son, and traveling first class isn’t too shabby either.</p>

<p>You are a fighter. My bet is on you.</p>

<p>Sorry about your treatments, and sorry about your bowel obstruction. I will translate your friend’s somewhat ill chosen remark - I am glad you told me because I want to be close enough to you to hear about such an important thing in your life. Now maybe she really is saying something about herself and not you, but I would want to believe otherwise. </p>

<p>If I hear about the death of an old friend or classmate that I lost touch with, I always feel badly that I did not keep up and know what they were going through. </p>

<p>As to the dogs, we love dogs, and cats, and really the dog was a part of the family. Not the same as a child, but still a part of the family. When our old lab died we did feel very badly. BUT, with a dog, we went out and got a new dog - not right away of course. It helped. However, after losing both my parents, my MIL and a few close friends, I know that there is no replacing people. Maybe some people feel pets can not be replaced…</p>

<p>Wishing you a wonderful trip!</p>

<p>I’m sorry to hear of your new challenges in your treatment and will continue positive thoughts for better results in this next round. Enjoy your time with family and friends and as other have said hopefully your mom will find a way to be there for you.</p>

<p>sunrise - Sorry to hear your current drug hasn’t been working well. I am always so impressed with your positvie attitude, humor, and your willingness to share your journey with us. I agree with the others, I do not see failure in anything you’ve done. You always push forward aggressively and optimistically. I hope you do well with the heavy artillery drug. I also hope you have a wonderful summer and trip to Asia.</p>

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<p>The perfect reaction, in my opinion!</p>

<p>When I was diagnosed with cancer five years ago, a good friend made sure the yearbook at the school where I work was dedicated to me. It was done with the best of intentions. But I am leaving this year and they have dedicated the yearbook to me once again. I doubt I will get three goes. The way I look at it now, I gather my rosebuds, all of them.</p>

<p>sunrise: Stay feisty and rebellious;) Enjoy your trip!</p>

<p>Best as you start a new treatment phase. Feisty and rebellious sound spot-on to me. They are very good qualities to bring on this journey. Thanks for the update.</p>

<p>thanks for all the encouragement.</p>

<p>Just in case you may think I am moping in the corner… NOT. I have unlimited reserve of self delusion, and feel that in the end I will emerge in one piece. I don’t know how to explain this phenomenon: all objective data paints my case rather bleakly. Yet, I “know” in my heart I will be fine. </p>

<p>You realize that the rationale me is puzzled by this level of delusion.</p>

<p>I think I know what it is. It’s a survival instinct. Not the demonstrative kind of survival instinct that shouts to everybody that “I will beat this beast and I will live!” with fire and smoke coming out of the nostril, mouth, and ears - the popular image of a ferocious chest thumping hero. Mine is more a result oriented, practical survival instinct. It does not waste its precious resources and limited energy on ostentatious plumage and a shock and awe display of resolve. Rather, it produces what I need most: optimism and a sense of self efficacy that prevent the creeping suspicion that all this is futile from paralyzing me. After all, if I am not optimistic that whatever I am doing, whatever next course of treatment I will embark on is not gong to work, what point is there to sustain what appears on the outside as a loosing battle? </p>

<p>This is what my survival instinct is all about: to keep me psychologically and emotionally afloat - so that I keep researching all options, so that I stay as a highly engaged self advocate in dealings with all the professional staff around, so that I keep my “environment” intact and not damaged through my struggle (my family, friends… most importantly my husband and two kids). </p>

<p>And, it made it so that I never felt anger about my whole situation. I certainly did not spent a moment wondering why me. Stuff happens in life, in nature. When tornado hits you, you don’t waste your energy being angry at it, you reserve all your energy to “deal” with it. I still don’t see my cancer as an enemy that I should beat to submission. I see it as a red haired little girl with a fiery temper. I will be the adult.</p>

<p>So, here I am. It’s a beautiful early summer day. I shall do something that will please me today. I am content.</p>

<p>I have been rooting for you to overcome your physical health challenges since this thread started, but I have to say you seem to be the most mentally strong individual I could imagine encountering, either live or virtually. I remain awed by your wonderful attitude and the gift you give in sharing it with others!</p>

<p>by the way, it really helps that I am remarkably vibrant in spite of all this, literally.</p>

<p>After 1.5 year of near non stop chemo, some of which were very heavy duty stuff, I can still do daily 70 minutes aerobics and carry on all the routine things without much fatigue, etc. </p>

<p>Lately, I have developed bowel obstructions and that knocked me down (it’s actually pretty painful - AND, I have extremely high pain threshold!). But that’s not the issue of my overall deterioration of the basic health. I also learned that bowel obstruction can be caused by a thin film of cancer cells on the bowel surface: that makes the affected portions of the bowel unable to contract (as it should), and it cause bowel obstruction. This might be the case for me: since I don’t show identifiable tumor masses yet: just thin flim…</p>

<p>All this is something I should also be grateful for. last four regimens did not succeed in putting me in remission, but they all partially worked in that it considerably slowed down the progression. My cancer is ferociously aggressive: at the time of recurrence, it took less than three weeks from complete remission to several 0.5-1 inch tumors. This time, while I was on various “failed” treatments, it took six months for it to develop thin films not tumor masses yet.</p>

<p>That said, it would be so nice if I can get a remission this time, even a short one - just so that my body can have some rest - flush all the toxic stuff from the system and keep it clean for a while…</p>