<p>continued thoughts of healing and peace to you both.</p>
<p>Dear Sunrise, just taking a moment to read your post Sandy writing, and aghast at what you (and your husband particularly) had to manage sans power. All I can say is you two much have been terrific friends to others to garner the level of follow up and care you are getting from your pals and loved ones. Hang in there. Special prayers for your husband’s relief and release with a transplant, and so pleased you are more comfortable this round of chemo than last. warm wishes from your SW VA reader</p>
<p>sunrise, I hope you are enjoying this beautiful November day.</p>
<p>first thing first: general status update. </p>
<p>we are now safely ensconced back at home with light and heat. When we had 8 inch snow on Wed night, the light went out again and my heart sank. Luckily, it came back within 3 hours. So relieved. My husband had three intense days of medical tests for his lung transplant screening, and thanks to our dear friends who drove him to Philly on Tuesday and Friday (he drove himself on Thursday), and a friend who accompanied me to MSKCC for my chemo on Tuesday, the medically intense past week went very smoothly. I continue to marvel at our good fortune of having so many good folks around us. </p>
<p>As for me, the chemo protocol I am on now has not been easy. Having a hard time eating and drinking and very fatigued. The abscess wound pain continues. Since I am so paranoid about developing dependency on pain meds (though doctors at MSKCC told me that even if I take the maximum they allow me to take, it’s NOWHERE near the level needed for dependency to develop), I take my oxycodone very sparingly. So instead of taking it on a regular schedule throughout a day, I tried to time it (because the pain is not constant. It’s usually afternoon and evening). well, I am not always hitting just the right moment - which would be about 30 min before pain hit. I often miss the window, and end up taking it when the pain cycle has already started. It takes about 1 hour for the meds to work if you take them AFTER the pain cycle starts. This means that I still spend anywhere between 1 and 3 hours a day in pain. Of course H is constantly frustrated that I bring this on myself out of stubbornness. Between this and near constant mild nausea, it’s hard to find a day when I am physically comfortable throughout the day. Yet, I am very well aware of the fact that my reaction is still on a very mild side among the population of patients on this protocol. Mustn’t complain… I also discovered that one can even get used to pain - I handle it much more easily now.</p>
<p>All this is just a short update. The real subject I would like to discuss today is my mother.</p>
<p>Those friends who have been helping me all along noticed how I have this nasty habit (some call it pathology) of resisting those who try to help me. I always attributed this to my pathological need to be independent. Recently, I did a lot of soul searching, and realized that the cause is elsewhere. I have a very complicated relationship with my mother. On the surface, based on what I DO and how I ACT, I am a very dutiful and devoted daughter. However, whatever I do for my mother, I do out of sense of obligation and grim determination to be on the right side morally. I do not do it out of genuine love or affection. I noticed early on that my mother lacked an empathy gene - this is a global issue and applied to all situations including affairs regarding her own children. Everything revolved around her needs and her wants. She carried this sense of being a victim who was cheated out of what she deserves. She always felt that her children were not good enough to her. The reason why I only told her about my cancer this summer when it was no longer possible to hide it from her was because I knew that the moment she learns about it, it will become another fodder to her narrative of being a victim - imagine the misfortune of having a sick daughter! I knew that once she knew, I now would have to fulfill my obligation of making her feel better by becoming a chief of consolation for her. I just did not want to sign off on yet another action item and wanted to postpone it as long as possible. By the way, when she found out, she DID behave exactly as I predicted. </p>
<p>Having grown up with a mother with so little empathy to begin with, I realized that dividing it three ways (me and my two brothers), my share of her empathy was the tiniest bit - just a sliver. I learned how to stretch it. I learned to live within my means - my quota. I had a built in alarm that beeped loudly whenever the needle was moving into the red zone. I trained myself NEVER to go over my quota. The result is, whenever a friend or an acquaintance offered a helping hand, I would always check my internal meter for my quota, and invariably it ALWAYS pointed to the red zone (meaning it went beyond what I “DESERVE” vis-a-vis what I have done for her/him in the past). My reaction is predictable: first, I feel enormously undeserving of such unconditional support, then I hastily retreat by turning down the offer. Some brave souls with an equally stubborn streak managed to exert their will and prevail. but these are exceptions. During last two years, I got a bit better, but this is still a lot of transformation to go through. When I shared this insight with a couple of friends, they said “You DO make it very exasperating to be your friend at times” or “Well, you do make us work hard to fight you”… One said “Now that you know the origin of your pathology, are you going to change” Well, not so fast. It’s one thing to realize the origin of your problem, it’s another to do completely 180 on it. But at least I understand where my issue comes from. </p>
<p>I am sharing this all to provide some background and context for what I wanted to share with you today.</p>
<p>Within a few weeks of learning about my cancer, my mother was hospitalized. It started with what I and my brother feel a psychosomatically induced fatigue and developed into a severe muscle atrophy, which later caused a couple of episodes of severe aspiratory disruption. If she had not been at a hospital already, these aspiratory episodes would have killed her. Due to her advanced age (82), the medical team was especially conservative, and kept her at a hospital over 6 weeks before they were convinced that the aspiratory episodes are not likely to happen again. During these six weeks, her medical team devised a regimen of outpatient and drug therapy that would prevent a severe muscle atrophy (hence no repeat performance of respiratory disruption), and gave her rehab for her muscle tones. She is now at home doing quite well.</p>
<p>I haven’t been able to have a long talk with her lately between her hospital stay and Sandy on my side. Yesterday evening was the first time I was able to have a long conversation. This moved me deeply, profoundly, and brought me to tears. She told me that while she was going through all medical issues at the hospital, she had a chance to fundamentally reevaluate her life, her attitude, and her orientation. She told me she finally realized how blessed she had been. What a good life she has had and still is having. How wonderful her children have been, and what an amazing husband she has had all along. More than anything else, she said, from her illness and life threatening respiratory episodes, she emerged as the fortunate one. She said, she is now determined to look after those less fortunate than herself. She said she would like to dedicate the remainder of her life to looking at life some the eyes of those around her and doing the right thing for them. Then she said “all this, I owe to you. When you showed me how one can handle the most disastrous situation with dignity, integrity, gratitude, and empathy toward those around her, be they your doctor, family, and friends, I realized that I should at least come half way in following your example. How could I just think about my pain and my discomfort when my own daughter with much severe issues of her own shows such courage and grace under fire? You are not just my daughter. You are my mentor, a teacher” I was absolutely amazed to hear this… </p>
<p>Later I had a long conversation with my two brothers. They both told me that our mother is like a different person now. That ravenous look in her eyes searching for her “rightful share” of other people’s empathy and sympathy is gone. The tone of her voice changed (for good). They said, you made the difference for her by setting the example.</p>
<p>I disagree. More than anything else, she, and she alone deserves an enormous credit for this transformation. At the age of 82, she showed a possibility of a transformation most people believe out of reach for one even half her age. My mother after all deserved all the devotion her children showered her with - no longer out of grim determination to do the right thing, but out of genuine respect and love. It’s truly an amazing human being who can change oneself at this age. </p>
<p>So, with all this happening around me, how can I feel sorry for myself. I feel truly blessed!!!</p>
<p>Sunrise, you make hope, dignity and empathy contagious. A true gift.
Funny what it takes for some folks to gain perspective, but even more remarkable to see such a dramatic change so late in life.
Best to all and thanks for the update.</p>
<p>oopppsssss…</p>
<p>Another spell auto correct disaster. I meant “respiratory” not “aspiratory”. the spell checker did global change from my original typo into “aspiratory”.</p>
<p>sorry for the confusion…</p>
<p>very profound post, as we all are facing our mortality as fifty-somethings among our own peers now and most certainly we have all been dealing with illness and death with our parent figures. My mother and my step-father passed in the last 2 years and we are experiencing a painful alienation from my surviving real father who is 86.5 and has taken a strange turn in life, right in step with his past life troubled history, but more hostile, more narcissistic, and yet he remains high functioning enough to remain solo and technically competent for the time being.<br>
Our home is full of boxes of memories, things tumbling out that were forgotten…embroidery I started and abandoned as a child, letters my mother received and saved. My living room challenge this week is to find the strength to get photo albums and stacks of boxes from my mother’s estate sorted and out of our living space before our sons come home for the holidays.<br>
To experience your mother’s expanded world view and to have actually heard her words regarding her pride in your character, and in that of your siblings is going to mean that those photos albums and boxes of estate items you sort through some day…will take on new shades of meaning and comfort that you didn’t have before. A Blessing indeed.
I will point out this to you Sunriseeast…although your mother’s injury and self involvement forced you to be unnaturally self sufficient and to smother many of your simple needs for support, you were blessed in the empathy gene yourself. Your writing above shows real insight into your mother’s limitations, for whatever that was worth to you as aged up and out into the world. Painful to have previously lost hope in getting more than anxiety and the basics from her, but how fulfilling this surprise! A mitzvah. </p>
<p>gotta sign off and face the stacks of these boxes and their fading memories down. Anyone here have experiences with “copying” photo albums? For siblings? Such a bother to take them apart to copy a few photos here and there. I imagine divorces cause the same challenge.</p>
<p>TAKE THE PAIN MEDICINE! Do not try to be macho, stingy with it. You have excellent physicians who won’t let you overdo it. Get ahead of the pain, don’t be chasing it- you’ll never catch it. Let yourself enjoy life, no need to be a martyr in pain.</p>
<p>So wonderful your mother has changed before she dies- you can have one more postive and eliminate a huge negative from your life.</p>
<p>Thanks for the updates.</p>
<p>Wow. How very touching, Sunrise. I am so happy for you that your mother can transform in this way and bring reconciliation. And I agree with your brothers and her own analysis: the cause of this transformation is your powerful example. Even with your cancer… (maybe THROUGH your cancer?)… you are bringing profound healing into this world. And the power and healing continues on this thread. Thank you for sharing.</p>
<p>What a wonderful story of your mother’s transformation! I’m convinced she DID learn from you, just as the rest of us on this thread have been doing for more than a year. You are a heroine and role model. </p>
<p>Now, please take your pain meds, too. :)</p>
<p>
</p>
<p>I really want to emphasize this point that wis75 made. You won’t become dependent by taking the medication on a schedule; in fact, you’ll actually be helping your body to heal, because it won’t be under the stress of so much pain. So listen to all of us and take it, please! :)</p>
<p>And many blessings to both you and your mother.</p>
<p>Sunrise, your description of your pain med efforts sound like trying to time the stock market… which we all know never works out very well. 
You trust your great doctor in so many other ways with your life, maybe you should let go and trust in him this time as well.</p>
<p>Great story about your mom… I have a similar mom, and doubt any “conversion” will be forthcoming. It is good to hear that it is possible, though. Best to you and your H, all of your virtual neighbors here are thinking of you.</p>
<p>sunrise, I am stunned and overjoyed to read of your mother’s transformation! The circles of people you inspire continue to enlarge.</p>
<p>I agree with others: take the pain meds on a schedule! The pain can actually interfere with your healing and recovery. This is not the time to tough it out. Think of the pills as just another element of your armamentarium.</p>
<p>Faline2, you might consider renting a storage unit for those boxes, so that you can deal with them slowly and on your own schedule.</p>
<p>thank you so much - all of you…</p>
<p>Here is my little fantasy. I would like to think of those especially when I am dealing with both pain and nausea at the same time to take my mind off from what discomforts me.</p>
<p>When I pass my five year mark (beating the odds of ten to one or worse), I will have a party - just like the one I threw for my H on his 60th birthday: a nice banquet hall and all that jazz. (of course, I hope I get to throw another party for my H way before mine when he recovers from a successful lung transplant surgery). </p>
<p>I would like to include in the invitee list my CC friends - I am sure there are those who live in the drivable distance (NJ, eastern PA, NY, CT, and northern MD etc). Would you guys be interested?</p>
<p>Anyway, reading all of your kind and supportive comments makes me feel like I am cheating - in that, I am alive and kicking and yet hearing the laudatory remarks about myself people usually say in someone’s funeral!!! You know artificially inflated virtues and no discussion on hideous attributes of the diseased one…</p>
<p>Your kind remarks are such a welcome distraction from the delicate diplomacy I am conducting with my stomach these days ---- “I just sent something in your way. Let it stay there. Don’t throw it back up to me” This is my full time job. And, I don’t always succeed. World hunger problems and the larger meaning of life an death will have to wait…</p>
<p>Let me be the first in line to accept the invitation to your five-year party!!</p>
<p>Damn NYMomof2-You beat me to it! Like so many others, my thoughts are always with you Sunriseeast, and your latest post about your mother was truly inspirational. I may not post (primarily bc so many others express my thoughts so much better than I could) but you can count me among the “party faithful!”</p>
<p>Sunrise-- Thank you for the inspiring post about your mother; I am glad for both of you, as your relationship should be more satisfying, well-deserved. Regarding the pain meds, remember that your body (you) deserves help and sympathy (pain relief) always, unconditionally, and not just when the pain is likely to be imminent, just like you deserve help from friends not only when things are at their most dire. Thanks again for blessing us with these posts.</p>
<p>I think some of us who live beyond the metro NYC area would come!!</p>
<p>I love parties! Esp. this kind!</p>
<p>And you are welcome. We are happy to remind you there is a wider world outside your stomach (on days when it feels like you are just an incompetent stomach.) ;)</p>
<p>We may not have balloons, cake, and punch, but often this thread is a celebration. It’s a celebration of your wisdom and courage and, this week, a wonderful celebration of the power of positive change as you enjoy this new attitude from your mother. What a blessing for you, particularly after the challenges you have been through with Hurricane Sandy. Sending continued good wishes to you and Mr. Sunshine.</p>