my diagnosis of advanced cancer: how to help my kids

<p>OK. More enterprising ideas about how to monetize my condition.</p>

<p>On Thursday (the day before the chemo starts - perhaps the last day, in a while, I don’t have to worry about germs and what not), I am planning to show up at my husband’s office in Manhattan to thank his colleagues who have been amazingly supportive of my husband and very generous to boot - they arranged meal delivery services that lasted forever. </p>

<p>The original plan was for me to stop by, have lunch with him, and spend some time at Barnes & Noble or Starbucks or wherever there are comfortable chairs reading a book or two, and then come home together. My husband thought I should just hang around in his building since they have comfortable chairs everywhere, and even a few hammocks at the top floor (it’s THAT kind of work place, if you know what I mean). </p>

<p>I said “you know, perhaps I should hold court in the atrium area or whatever the most visible place with a sign “Patient of an advanced stage, very rare deadly cancer: $1 for viewing, $5 for 5 minute interview. $10 for getting a peek at a surgery scar” $20 for touching the scar”. </p>

<p>He thinks it’s a hoot, and perhaps we should do it in Times Square for a better monetizing potential.</p>

<p>There is always a silver lining for everything. It just takes a creative, enterprising mind.</p>

<p>Regarding the wig, my D’s dance teacher was taking something out of hte oven and reached in too far and her wig started to melt!</p>

<p>^^^Oh my, well there’s a good reason to not have to cook.</p>

<p>Sunrise…Post surgery only a few weeks and you are out and about going to have lunch in the city…you are one strong terrific lady!!! Your family must be so proud to have you as their wife and mom…have a great day!</p>

<p>When I went to the Costco photo labs to pick up the photos of what they took out of me (yes, I asked for photos for med school DD) the girl (who I see often) was interested in the weird pictures, I let her see my scars for free!) Who knew I was passing up a money making opportunity. I thought it was a crack up that she wanted the whole story.</p>

<p>Silver lining story. A dear friend of mine wore her hair in exactly the same style for decades prior to undergoing chemo. One day I walk into the school office and a woman was near me. Suddenly I hear a familiar (because she has a distinctive accent) voice and I did the double-take of my life. My friend was wearing the most fabulous wig that was a stylish modern cut and she looked twenty years younger. She obviously heard this quite a bit during the period she wore the wig and I think her husband was quite taken with the new look. Her real hair has long since grown out and she has never returned to the style of before. It’s not quite as fabulous as the wig but she did learn to work with it in a way that continues to flatter her.</p>

<p>Sunrise - You GO girl!</p>

<p>Just checking in to see how you are. good luck tomorrow and hope you had a great day. I decided if Ihad to have cancer that I would not feel guilty about the good effects that come form it. Making money might be one, a speeding ticket my husband got out of, etc…
I went to a salon in Boston, when I still had hair, they matched my hair and style, over a couple of seesions. showed me how to care for my wig etc… Then when I was ready I went in to a private area and they buzzed my head for me. My insurance paid a certain amount and I paid extra, for 1/2 human 1/2 synthetic wig. it looked nice but I rarely wore it as I was pretty ill. (bad GI side effects, not the norm) I wore scarfs and sleep caps. The funny thing is when my hair grew in, it was a different color and curly. (was stick straight) added to the 80 pound weight loss , nobody recognized me. whole new woman! I joke with my husband that he is now with his girlfriend. People actually recognize him and not me. So ya never know how life is going to be. I do know that you will handle this chemo, please let us know how you are are and how we can help. I know cc was a place of sanity for me, with lots of support.</p>

<p>Downtoearth: thank you so much for checking up on me. I thank every one of you for your generosity and good will. </p>

<p>Yesterday, I went on a wig shopping. My insurance covers up to $750, so I got two. I got synthetic wigs. I felt it’s creepy to wear someone else’s hair. A friend of mine came with me. She had to go through chemo 6 years ago for her stage 1 breast cancer. So, the moment she heard of my condition, she immediately volunteered to organize a wig shopping date with me. </p>

<p>And, boy, she was a life saver. I had no idea how I was going to feel when I walked into the wig store. Just seeing all this hair on lifeless manikin faces was so depressing, I was emotionally paralyzed. My friend cheered me up, busily walked around the shop, and brought three wigs for me to try, and I ended up buying two of the three she picked. Then she took pictures of me in the wigs, sent the photo mail to my husband. </p>

<p>Later that night, I sent email to her telling her how grateful I was that she was there since I was more or less dazed and emotionally unable to “accomplish the mission”. She then responded “you know, when I went on wig shopping, I cried the whole time they were fitting me with different kinds of wigs”. I understood then why the first thing she offered the moment she heard about my cancer was to organize this wig shopping date. I always loved her and admired her. Now, she earned my loyalty for as long as I can project into the future. I have many vices, but taking other people’s good will for granted has never been one of them. </p>

<p>Today was full of activities. I went to Manhattan to have lunch with my husband, and brought a bouquet of flowers to his office for all of his wonderful colleagues who were very generous and kind (they arranged a meal delivery service that lasted forever). I had an opportunity to personally thank “ring leaders” for this rescue operation. Then I stayed in one of their conference rooms to do some web related work. Had dinner in the city and went to see a Broadway show (Little Night Music: fantastic, highly recommended). Came home close to mid night. A full day indeed and a memorable day before chemo starts tomorrow that will ground me for a while. I get a weekly chemo for 18 weeks at the minimum. There is no margin of error. I certainly won’t run around in public places with the white blood cell count constantly tanking.</p>

<p>In terms of recovery from a surgery, after a bit over 3 weeks, I feel almost fully recovered except for the swollen belly and not being able to do intense 70 minute cardio exercise I used to do religiously every day. Running around all day long and climbing stairs up and down is no problem at all. Sometimes I forget that I had this surgery until I see myself in the mirror and notice an 8 inch vertical incision on my belly. </p>

<p>Yes, tomorrow is the first day of chemo. I am really looking forward to it, not because it’s going to be so fun. But, because I know this is going to help me. I have bulky disease still left around my bowels, and I don’t want to give it anymore time to develop further. </p>

<p>I don’t know where this is going. Though I am realistically optimistic, nobody knows for sure what the future holds. Strange thing is, I don’t see this cancer as a calamity or a monster. Regardless what else it does to me (some bad stuff), it also has done wonders for me in a profoundly positive way. </p>

<p>I have always been self reliant and independent to a fault. I upheld these attributes as an absolute virtue not subject to challenge and questioning. I certainly have worn it like a piece of armor, and used it like a weapon – both offensive and defensive. But, now I realize that this is a form of arrogance. This cancer of mine taught me to lower my guard, and become a bit more porous. </p>

<p>My husband told me in 26 years together, he has never felt so close to me – before, no matter how close and intimate we were emotionally, intellectually, and otherwise, there was this invisible barrier on my part that won’t let him come through all the way. Now, that’s gone, and he is saying he found the experience of coming through to me all the way exhilarating. He says, that’s why he finds taking care of me so rewarding, rather than feeling burdened by it. He says every act of caring for me on his part is amply rewarded thousand folds. </p>

<p>I never realized that I had so many good friends who are coming out of the wood work to help, and I am accepting their help with humility. In the process I learned that my friends who are offering to help actually find it rewarding to be helpful. Before, I was so hung up on not being a burden on other people, I did not realize that many of them actually draw satisfaction from helping. Previously, I considered this a one way street: I can help others as much as I can and will, but I don’t let others help me. In a way, I jealously guarded it (the satisfaction of helping) as a privilege that I won’t share with others. </p>

<p>That’s why I don’t regard this cancer as an unequivocal evil. It has brought forth wonderfully positive changes in me, and I should say “thank you”. My cancer recovery story will not be that of “a hard battle”, “a gory fight”, and “a jingoistic battle cry”. Instead, it will be a story or negotiation, persuasion and acknowledgement. If I were to describe my sentiment toward cancer in an anthropomorphic manner, this is what I would say to it: “You are not evil. You have done some good work, and I appreciate it. However, it’s time for you and me to part ways. Let’s find an amicable way to conclude this affair. Good night and good bye”</p>

<p>Tomorrow will be a long day, and a major milestone for my recovery. When I fall asleep tonight, I will do so feeling profoundly grateful that even with this disease, I have been dealt one hell of a winning hand, and I am a very fortunate woman. No matter what happens, this good thing already happened, and nothing will take that away from me.</p>

<p>All of you on this thread have been wonderful. Thank you, and I really mean it…</p>

<p>sunriseeast - you are AMAZING!!!</p>

<p>When I went wig shopping, alone, I sat in the chair and sobbed. No one should have to do that alone. Purell is your friend. Lysol your door knobs. Your family will be out in the world and bringing in germs. I did manage to go to a few movies…went early am and…sprayed the seat. </p>

<p>Good luck tomorrow. When I started chemo I developed a system…one down…x amount to go. Or…how many hours total and then I ticked them off in my head.</p>

<p>As for the hair…yeah mine came back super curly. It’s been four years and it just a little wavy. </p>

<p>Good luck.</p>

<p>Sunriseeast: Your outlook and attitude and grace astound me. I am glad you are starting your chemo today…one more step in the journey. You will be in all our thoughts/prayers.</p>

<p>sunrise - I want to thank you again for sharing your story with us. The emotions and knowledge that you and other cancer survivors are sharing on this thread is information that can be life changing for all of us. I’m sending virtual {{hugs}} and positive thoughts for a successful chemo treatment today.</p>

<p>Sunrise-May you continue to heal and rest. I am sending my thoughts and prayers to you and your family. Stay strong, you are an inspiration.</p>

<p>Sunrise - Good luck today! I always felt that chemo was like pacman with the cancer cells. Take some mints or mint gum - it helps with the nausea. I also took my ipod with a relaxing playlist. </p>

<p>My insurance paid for two wigs. I only wore them two times. Too hot and heavy for me. I found a store with great hats and special scarves that stayed on my head. Just another option for you to think about.</p>

<p>You are in my prayers.</p>

<p>Good luck today, sunrise! We’ll all be thinking about you. </p>

<p>I just counted Fridays on my calendar. Your 18th week comes at Mother’s Day weekend. I think that’s perfect timing to mark the (hopeful) end of chemo and be surrounded by your loving H and sons. May visualizing that joyful day help you get there. </p>

<p>:)</p>

<p>beaming healing, cleansing thoughts~~~~~~~~~~~~~~~~
Go, chemo!!</p>

<p>Sunrise, when I am puny, sick, nauseated, whatever, I prefer to not be in my body :wink: In my head reading works well for that, but if I am sick and cannot read and sometimes the noise and light of TV is too much, then I have to find an alternate distraction. After surgery this summer, when I had a really bad horribly nauseated week in bed, I had an ipod with an old favourite book on it and that got me through many long hours.</p>

<p>You can download audiobooks for free from many public libraries, I chose Clan of the Cave Bear as it was around 20 hours, I had read it so many times that if I dozed off, I still knew what was going on when I woke up, etc. If you are interested in the specific how tos, PM me.</p>

<p>It was such a powerful distraction for me from the nasty way I felt for that brief time, and it has grown to be a habit since! That crazy pre-Christmas line at the Wal-Mart site to store shipping pick up, no problem, I pretended i was not there for the 45 minutes I waited in line!</p>

<p>I add my thoughts and good wishes for Sunrise. I also have a chemo related question that has been troubling me and perhaps some of you know the answer. I have a good friend whose husband recently underwent chemo and radiation for lymphoma. She read up on dubious internet sources and decided to dose him up with lots of vitamins during his treatment. When I told my nurse sister about that, she said that was not a good idea at all because you don’t want to do anything to boost new cell growth during chemo. I very gently told my friend that she should probably talk to their doctor about vitamins but by the time I knew about it, it was very late in his treatment. Fortunately he responded well and is in remission. Do any of you know if vitamins during cancer treatment are harmful?</p>

<p>Vitamins during chemo treatment are not recommended. They inhibit free radicals which are helpful during chemo to kill the bad cancer cells. Not recommended during radiation also. You can take them after.
I can relate to sunriseasts comments. You put it so beautifully. I have grown exponentially during this process. I have also learned to ask for help and to accept it. I had no choice. The world did not fall apart and I actually felt a sense of self worth that I had never had. My husband and I are much closer and I find myself expressing myself and being more affectionate to other people. When I was young I was severly criticized for being too sensitive, I struggled my whole life to hide this. mostly by holding back. Now I dont do it. people will comment on how happy I look, I think I have finally let go and allowed myself to open up to hurt ot critisism. I didnt realize how strong I was until I was so sick. I realized people loved me even when I wasnt giving to them. My H always said I was such a deep thinker, and I always felt embarrassed by this, or different. Not any more.
I so hope your first treatment went well. Please write or pm with any questions.</p>