BAD IS GOOD

March 30, 2010 Tuesday

Funny how something bad can turn into something good. I've been AWOL for the past week, enjoying my freedom. I've been to dance class several times, chanting with friends, watching movies, and basically ignoring my "in treatment" status. I didn't blog because I've been too busy enjoying my life. My daughter is coming home in two days, so I've been digging out her room since it's become the 'dumping ground'. Doing unfun things like taxes. Blech. Who wants to hear about that? So I played hooky from the blog. I have decided to start to turn the blog into a script. Scary, but I am determined to do it, good or bad.

I knew I would blog today because I had to visit the Cancer Center today to see my oncologist and my radiologist and also to have my herceptin treatment. This is how I thought it would go.

"Today saw my radiologist, she is very happy with my progress and doesn't need to see me again for a year. Dr. Speyer likes my hair and says my bloods are perfect. Happy Easter, see you in three weeks. My herceptin treatment goes seamlessly, and I am out the door in under 3 hours."

NOPE! I went to get blood work done first. Sarah, my nurse, set the port iv in place with two tries. The first attempt hit the wall of the port. =/ But the second one went right in. Today the port would not cooperate, it would receive but it wouldn't give. It happens. So Sarah gave me an injection of Heparin and let me sit for 15 minutes. The port finally decided to work. I stood up to go to Dr. Speyer's office and the coughing began. I felt like I had something in my throat, I coughed more. I felt like my throat was closing up. I coughed harder. It was okay to take breathe in, but just like the port, I couldn't get anything out without falling into a coughing fit. I went to the waiting room with a cup of water in hand, and sat there for a while, gagging and choking on nothing. The coughing got worse, so I decided that it would be best if I got upstairs ASAP to have this checked out. It then dawned on me that this had happened before when I had trouble with the port. I was given Heparin then, too. I had a sudden without warning coughing fit then as well, but it didn't get this bad. I wondered if I could be allergic to Heparin. I checked in upstairs through my coughing fit, and it seemed as if it would never end. Patients and their loved ones stared at me as if to tell me I was unwelcome there. I couldn't tell them not to worry, I wasn't sick, just choking...

Things were just plain old weird today, because Dr. Speyer came out to get me; not the usual drill. He could tell I was struggling to breathe, so he checked my lungs right away. At first, perhaps the heparin in the port had thrown a clot (very scary thought), maybe the port was kinked, so a test was ordered to have dye injected and then an xray to determine if the port was okay. I took two benadryl per doctor's orders and went down to have my herceptin treatment. Treatment went really well, and I even got a massage from R.E.S.T.! I was saddened to learn that R.E.S.T. has run out of money and that this program might fold if NYU Medical Center decides to dump it in a couple of months. I wish I had money, because I'd throw millions at them to keep it going and spread it to all the treatment centers. These massage therapists have made the journey bearable. I have to write NYU Langone Cancer Center to keep it going.

Next, Ed and I made our way in the pouring rain to the Hospital where I had my port study done. Ed had found a parking spot, but it would have been impossible to find another one, so we elected to walk. Soggy from the rain, I checked in and headed up to radiology. I was asked multiple times why I was there. I finally met with Dr. Aquino who once again asked me lots of questions. I repeated my experience, and I could tell she had already come up with an answer. I climbed up onto the bed, and was prepped for the study.

The good news is that there is nothing wrong with the port, but the placement is "short". It's suppose to go into the opening of the heart, but it doesn't quite make it. Dr. Aquino looked at me and said, "I recommend that the port be replaced." Are you kidding me???? She did say she'd would pass on her recommendations to Dr. Speyer and he would have final say. I was so bummed out. Will the Insurance Company pay for this? I've cost them so much, I wouldn't be surprised if they denied it. So Ed and I head back to the Cancer Center to meet with Dr. Fermente's Nurse Practitioner, Marie. I tell her all about what happened, and she agreed with me, I had an allergic reaction to heparin. The good news is that I am doing great and Dr. Fermente doesn't need to see me again for an entire year. So I got 1 out of 3 in my vision.

I got home around 3pm; from 9:30-3pm. See what a hiccup can do to your day? I wasn't home too long when I got a call from Debbie, Dr. Speyer's nurse. You guessed it, the port has to come out. It's just not worth it to replace for 10 more treatments. I'll just man up, and get the iv in the arm. The chemo drugs are what really destroy the veins, not the herceptin. In three weeks I'll have a blood test to check the clotting factor before surgery to have the port removed. I don't know when the port will be coming out, but it will be within 6 weeks.

So from a bad came a good. If I hadn't had that reaction to heparin I wouldn't have known the port was short and basically hugging the wall of my artery, so fluid could flow in without a problem, but the tip would suck up on the wall of the artery thus making it difficult if not sometimes impossible to draw back. Looking back over treatment, the days the port would not cooperate were the days my chest would ache for a couple of days. Marie called it like getting a hickey on the inside. I'm glad I am getting the port removed. One step closer to finished. So what if I have to get stuck in the arm every three weeks, I'll deal. It's not like I'm hooked up for 4 hours, it's only 30 minutes.

Lesson learned, I can't use Heparin anymore, it causes mild anaphylactic shock, and will only get worse. I'm glad I spoke up and refused to believe this was a random occurrence, because it wasn't. I am grateful this happened. Now I know, and I want everyone to know and to really get this, Only You Know Your Body Better Than Anyone, if you feel like something is off, it probably is. Stand up, let your voice be heard, you aren't just the patient having stuff done to you; you are part of the team of healers.

I am so exhausted between the benadryl and the craziness of the day, and the dreary overly wet day, I just want to curl up and sleep the rest of the day away.

Remember, that everything happens for a reason, and nothing is random. What, at first, looks to be something bad, just may turn into a hidden benefit. I got this message just days ago. I believe it really speaks to this moment.

[Nam-myoho-renge-kyo is like the roar of a lion.]

What sickness can therefore be an obstacle?(*)

Chanting daimoku with a lion's roar,

let's obliterate the devil of sickness.

Don't be defeated under any circumstances.

(*)"Letter to Kyo'o, WND I, p. 412

So with a Lion's roar, I will not let this defeat me under any circumstances.

Nite!

Light and Love!

Melissa

DEPRESSION, LOVE, LUIGI

March 22, 2010 Monday

Yesterday I woke up feeling so depressed. I can't explain why, just was. I was easy to tear up, and felt ridiculous because I really have little reason to feel down. I have friends who love me, my husband who would walk through fire for me, kids who care and love me, and I made it through chemo and radiation with little side-effects, but somehow I felt so down. I headed up to the SGI Center for Soka Spirit, hoping to jump start my happiness. It helped, but still I felt it pulsing underneath my renewed spirit. I headed home wondering what it could be. I walked through the door and Ed was there ready with a cup of tea and a kiss. We watched the news and felt so happy that the Health Care Reform Bill was looking good to pass in Congress. Great news for our family and many of our friends. We then got ready to go up and watch dancers, singers, and film makers celebrate Luigi's 85th Birthday. The place was packed and pink champagne was flowing with plenty of healthy food to munch on. We entered the auditorium and readied for an afternoon of incredible talent. From beginning to end I cried. This man, Luigi, who has earned every single ounce of love he receives, showed why he is so loved on this day. It started with a short archived film that showed his body of work. The man. The dancer. The teacher. Then the dancing and singing began, that gave back to the man/teacher/mentor who has given so much over his lifetime. Performers recreated his work with perfection. Professionals and students. Young from 10 to, well let's just say, over 40. These dancers laid it all out on the floor. There were two highlights from the day; first Company D from Memphis, TN, who flew in on short notice. A company of three dancers were able to make it, and they gave their hearts and left not a dry eye in the house. Three young dancers who proved that dance is from the heart. Company D is a group of dancers with Downs Syndrome. They moved beautifully and connected with such heart. Their expressions on their faces gave away the joy they felt as they performed. Pride and Joy. There are no limitations with Luigi, only the limitations of one's own mind. There is no taking "NO" for an answer with Luigi. Anyone can dance. Doesn't matter if you aren't Tommy Tune or Pavlova, when you move with Luigi you are a dancer. He brings out the best in you and you leave feeling like a dancer, a star.

The second highlight came from Tami's School of Dance from Japan. Students and teachers from 10- over 30 flew in from Japan to dance just for Luigi. This group was sheer perfection. It stirred up excitement in the audience and moved us to our feet. The timing, the precision, the love. Finally to close the show a segment from the upcoming documentary on beyond Broadway by Rick McKay honoring Luigi. Stars like Liza, Ben Vereen, Tony Roberts, Twyla Tharpe, and so many other stars of Broadway spoke of Luigi and his gift to our industry. We all left grateful. We all left happier. We all left loved. To my dear sweet darling Luigi, You stole my heart, you gave me back myself, you inspire me each and every day, and for that, I thank you. As we left, I looked at my husband and said, "If we all have even 1/10th of the love Luigi receives, we would all be so blessed." Yes, Luigi you are the very definition of LOVE.

My depression lifted like a veil. Perhaps it was treatment related. The idea that it is over; the crisis of treatment. I had to keep it together for so long, be up, be positive, and now that I don't have to be brave, the depression snuck in. I fought all day that beast, and with the love of a husband, the support of Soka Spirit, and the blessings of Luigi and the beauty of his choreography, I pulled out of the dive.

Then the cherry on the top, Health Care Reform made it through the House. I realized as I cried tears of joy, that my tears are like the gentle showers that bring the flowers forth. So it was alright to cry now. So cry I did. Happy gentle tears.

Yes. Spring has arrived. The long dark journey through Winter is over. From here things will only improve. We have already won. Work will come, and conditions will move from bleak to bright.

Thank you Luigi. Never Stop Moving. Never Give Up. Never Take No For An Answer.

Nite!

Light and Love!

Melissa

MUGAS, EYESIGHT, AND BIRTHDAYS

March 20, 2010 Saturday

ED'S BIRTHDAY!!! HAPPY BIRTHDAY MY LOVE!

I've been too busy to blog these past few days; I've been out enjoying the nice Spring weather, dancing, and then there is the bad...doing taxes. UGH!

My tests went well on Wednesday. My eye exam was very interesting. I had good and bad news. The good ~ I don't need my reading glasses now. A hidden benefit of chemo. Somehow the chemo corrected my aging vision. Huh! go figure. The bad news ~ my near-sightedness has gotten worse by .75. This explains why it makes little difference in wearing my glasses or not wearing my glasses. I can't see. HA! Everything else was good. So I picked out a new pair of glasses that make a statement. Black! I'm tired of my wire framed glasses.

I moved on to my Muga Scan at NYU Medical Center and I forgot how hard it is to hold your arms over your head and not move at all for 30 minutes. 30 Minutes felt like hours. It didn't help that the tech for the day wasn't feeling well; his nose was raw from blowing his nose and he said it was allergies...really?... I think not. He had a cold, pure and simple. At any rate, I tried not to breathe too deep around him, I don't want that "allergy". He didn't speak much, not at all during the procedure, and he kept leaving the room. I don't know about you, but are they suppose to do that when someone is laying on a narrow table and undergoing a procedure that requires the person to lay perfectly still? Several times I was left alone, and in those moments panic would set in. Questions that raced through my mind ~ Where is he going? When will he be back? Is something wrong? Did he go to get a doctor? My shoulder is killing me. Would they notice if I moved my arm? Better not move. When is he coming back? Oh there he is, where did he go? Why is he leaving again? My shoulder really hurts now. Where is that guy? Why doesn't he speak to me? When is this test going to be over? There he is. Should I ask how much longer? If I speak will that constitute movement? Better not talk. When is this test over? There he goes again. What if he doesn't come back this time? I'm locked in here, no one would know if he left. Is that the combination lock clicking? Thank God, he's back. Is it over? My shoulder, I can't feel my arm or my fingers.

Finally, the table began to move and he spoke. "You can lower your arms, you are done." I went to move my arms, and nothing, frozen in place. "I said, you can lower your arms, you are done." I'm trying. First my left arm moved, but moving my right arm was not only difficult, it was extremely painful. OIL CAN! OIL CAN! Finally, with a pop, my shoulder gave way and with my left hand I was able to move the arm that was numb and pinned and needled. I couldn't have left faster. This was my second Muga, and as I think back on the first one, I remember the tech being more supportive. He talked me through it. Kept me calm. Let me know when I was halfway through, and made me forget about my arms being uncomfortable. I am going to say that because this guy had "allergies" he just wasn't in the mood to talk, and was leaving the room to blow his nose. For that I forgive him for abandoning me. Ed wants to report him, I say, let it go. It was the first time that Nam myoho renge kyo didn't help me much. The pain was overwhelming. I suppose it helped me from panicking completely and trying to escape, which is exactly what I wanted to do.

My arms ached for two days. I went to Luigi the next day, and it felt so great to move. I so appreciate Luigi. He is so inspirational. The friends I have made there are invaluable. When I got there, only three people had signed in, and Luigi was concerned. He said, "What will I do with only three people in class?" I said, "Dance." As it turned out the class filled up, no doubt people enjoying the beautiful weather. I never feel so free as I do as when I am dancing.

Friday was spent doing TAXES. I need say no more on that subject. One of life's must do's that no one enjoys doing. Blech! My reward...going uptown to watch Tami's dance company from Japan do a private concert for Luigi and fellow classmates. Luigi's 85th birthday is today, same as Ed's 62nd. They flew all the way from Japan just to perform for him. What a great afternoon. The gift was priceless and Luigi was filled with joy and pride. To see his technique passed on to dancers as young as 10, and having them execute it so perfectly, was awe inspiring.

So today is Ed's birthday and Luigi's! Two men I love dearly and have given me so much. Zodiac twins. Today is Ed's day. We are going to a movie and then whatever he wants to do. Tonight we will celebrate with friends in the West Village.

I feel good. My old strength is beginning to return. I'm getting new glasses. I'm going back to dance class. The taxes are getting done. Sounds like my Winter is leaving. Welcome to my Spring. I'm back.

Nite!

Light and Love!

Melissa

HAPPY ST PATRICK'S DAY!

March 17, 2010 Wednesday

It's been several days since my last blog. My last radiation was Friday, as you know, and the weekend was spent sleeping and if not sleeping then being exhausted. Radiation has a way of sneakily taking your legs out from underneath you. It seems strange that just laying on a table for a short period of time, listening to music, holding your arms and neck in an uncomfortable position can cause such exhaustion, but it does. It really does! My burn never really developed into much of the burn they described; I'm very thankful for that. Some minor itching, and a bit of a sunburn appearance, but nothing near what it could have been. It only gets really red when I have a hot flash, so my color pulses every couple of hours to a bright hot red for about 5 minutes. I can't even pretend to not have a hot flash because the flushing of skin gives me away; not to mention the ripping off of sweaters, scarves, and the profuse sweating from every pore on my body. Did I mention I HATE hot flashes?

My weekend was busy watching Ed move in a "new" wall unit. We acquired it from our neighbor's kids after their father passed away from Bladder Cancer a few months ago. He was a lovely man, and the best neighbor. Quiet and respectful. His grandchildren would come over on the weekends and we would let them play with Blue. Now, we have a piece of Ben to remember him by. I tried to help, but the exhaustion got the best of me, so I watched Ed elbow grease the residue of Ben's smoking habit from the finish of the furniture, lift these heavy units into place, and now I watch him place the books. Getting this Wall Unit has forced us to clean house, get rid of paperwork that has long since outlived it's purpose. It is a long process, but a needed one. SPRING CLEANING.

I did make it to Dance yesterday. I didn't know if I could make it through class, but I did! I was very proud of myself for lasting. Thank goodness Luigi chose a slow number. A fast paced tune always has lots of turns, and that would have done me in. I made it home and then it took hours to recover enough to go shopping at Trader Joe's. After that, I made a great dinner, ate and promptly went to bed. Every two hours I would wake up soaked in sweat, over-heating, and throwing off the covers, drinking water, visiting the bathroom, all stumbling in the dark, because I really wasn't fully awake. I gave up after 4:30's wake up sweat and trying to go back to sleep for an hour. My mind became full of the "what-if's". Money, jobs, and the big one, what happens if Ed doesn't qualify for coverage come August? COBRA! My God, we are drowning with the premium of being covered now, what will happen to us if we have to go on COBRA!? Bills, taxes.....that was it, I had to get up, and distract my mind from the "darkness" trying to take over. I sat in the darkness and chanted for Peace of Mind. Then I turned to my addiction....Farmville and Zoo on FaceBook. Now, with Ian off to school and Ed sleeping in before he goes off to a NON-PAYING reading up in New Rochelle for the day, I'm once again exhausted. I have an eye appointment today, so soon I'll have eyeglasses that will enable me to see correctly, and then I head across town to NYU Med for my Mugga Scan to make sure my heart is still alright. The herceptin can cause heart damage, but I'm feeling certain there is no damage done.

After I'm done with my tests, I'll come home, and Ian and I will decide what to do for dinner. After that...I'll snuggle down on the couch and watch Modern Family, and then head to bed to begin the dance with my partner...Hot Flash.

Did I mention that I hate Hot Flashes?

Nite!

Light and Love!

Melissa

LAST DAY OF RADIATION!!!!

March 12, 2010 Friday

TGIF!!!! Yahoo!!!! Today was the last day of radiation. I cannot say enough good things about NYU Langone Cancer Center. They are the best of the best! The level of professionalism is only the tip of the iceberg; it's the level of personal care, concern, and love that matters the most. I have never in my life been treated with such respect and dignity. I'm so glad the radiation is over, however, I will truly miss the ladies of the radiation department. We had fun everyday and they always put me at ease and made the nerve wracking fun. I forgot I was having treatment, rather it became the most expensive tanning bed ever. I brought a box of fancy chocolates for the gals today to thank them all for their help. Nelly is so funny, she took the box and told the other women she got me almost every day, so they were hers. I told her to play nice and share....all in fun, all in fun. I gave and got big hugs from them all, and I felt like crying. I will miss them, they were such a beautiful support system for me. As horrible as this all has been, I really haven't felt the brutal ugliness of it because of people like my girlfriends in Radiology. I can' t even imagine what it will be like when my herceptin treatment ends in October; Sarah (my oncology nurse) is such a big part of my world right now. I'll try not to cry too much.

I'm not really done, just the really hard stuff is over. I still have many follow ups to do, the herceptin every three weeks til the end of October, then at some point have my port removed, and the all important CatScan to declare me 100% cancer free. Yes the road is still long, but the road has smoothed out and the twists and turns aren't as hairpinned as they once were. I'm heading West into a fabulous sunset to start renewed to Life.

I got the most wonderful gift today only moments after returning home from radiation. A bottle of Veuve Clicquot Ponsardin Champagne. It was as if FedEx was hiding around the corner from my apartment, because I had just taken off my coat, and hung up my purse and was headed for the bathroom when the doorbell rang. My love and thanks to Kelly and Lou! Yes! it is a day to celebrate. The champagne is in the fridge getting a good chill on, and tomorrow night we will feast on Filet Mignon, twice baked potatoes (both from Omaha Steaks, a gift from my brother-in-law) and asparagus. Yes, a day to celebrate huge! So we will toast to Victory tomorrow night, and eat like the rich and famous, we have all earned it. I only wish Sarah could be here to celebrate with us, or perhaps it would be ideal if we were with her in Hawaii.

I am so appreciative of all the goods things that have come into my life, and yes, even the bad. I have found myself on this journey, and I really like who I am. I can't wait to rid myself of the exhaustion so I can tackle all of my dreams.

Today I finished phase II of III in treatment. I am happy with the progress, so are the doctors. I have already won. Victory is mine! Good bye Mr. Lumpy! Good bye Over expressive HER2! Hello Health! Hello Dreams! Hello Life!

Nite!

Light and Love!

Melissa

TEENAGE MEAN GIRL

March 11, 2010 Thursday

Today was my second to last radiation treatment. I woke this morning very tired, wishing I could go back to the bed and snuggle in on this grey dreary soon to be raining day. I did my morning routine, walked Ian to the elevator kissed him goodbye wishing him a great day at school. I let Ed sleep in a bit, and soon we were off to the Cancer Center.

My exhaustion is there, always there, but doable. I was in such a great mood, looking forward to the second to last treatment, for tomorrow it is done, over, finished. The routine started out the same as it always does. Check in, say good morning, go back to the inner waiting area....this is where the needle record screech happens...I put my things in the locker, turn to go into the dressing room to change, when I see a teenager lounging in one of the dressing rooms; the other room is closed and so I assume it is occupied. I politely say to the girl, "Um, do you need to use the room? because I need to change into my robe." She looks up at me and says, "Isn't the other room open? I think it is." I was like wait a minute, you aren't suppose to be in these rooms, they really are for patients only. She leaves the dressing room and gives me lip under her breathe as she passes me by. Okay, whatever. I really don't want to get into it with her. After the 30 seconds it takes me to change, I come out to get my book and to hang the rest of my clothing up in my locker, and she says, "You just told me to get out the room because you are a RACIST." WWWHHHAAATTT????!!!! Where did she get that idea? I laughed and said, "I'm not a racist. I would have said that to anyone who was in the room that didn't belong. That room is for patients only, not for your comfort." She then said to quit talking to her, why are you still talking to me. Go away. And back into her texting she dove. I said, "I'm talking to you because you accused me of being a racist, of which I am not. I want to be clear with you that I don't care if your skin is purple, white or blue like the Avatar that I would have said the same thing to you. Color had nothing to do with my requesting you to leave that room. It is for patients only." She then said something else snide under her breath and I then said, "You know what? You are just a brat. A fucking little brat, and color figures nothing into bad behavior." She said she was glad I wasn't her mother, to which I responded with, "If I were your mother, you wouldn't behave this way. My daughter knows better than to sit in an area that is not for her use. And she certainly wouldn't speak to anyone the way you are." To wit she responds with, "I'll be sure to tell my mom that when she's on her death bed." This is where it starts to go WAY OUT OF BOUNDS. I say, "Excuse Me?" She says her mom has Breast Cancer (as if that is her get of of Bad Behavior Card) and I say, "I'm sorry, but I, too, have Breast Cancer and don't need to be spoken to the way you are speaking to me." Then the tipping point comes.

She says, " Good! Good! I'm glad you have Breast Cancer! I'm glad!" Translation: YOU DESERVE TO HAVE BREAST CANCER AND I HOPE YOU DIE SOON.

That was it for me...I jumped up to get someone to have her removed. What I really wanted to do was to smack her upside the head with the very heavy, hard bound book was I trying to read, but somehow Josei Toda ( the man the book is about) stopped me. A tall African-American man came into the waiting area to find out what was going on. He was a radiation tech. Confused by the commotion and trying to discern what was going on, I said to him, "I really need you to escort this young lady out. She is really upsetting me." She, of course, started in with the "I didn't do anything to her. She's crazy." I repeated myself, by this time I was shaking I was so upset. Nelly came in, (my radiation tech) and saw me upset; she had NEVER seen me anywhere near this level of anxiety. I repeated that I really needed this girl to leave the room, but it seemed to fall on deaf or confused ears. The girl came between me and Nelly and started with her revisionist history (better than Dick Cheney could have done) "I was just sitting here calmly and she came in all upset and crazy and was yelling at me to get out of the room because she needed to change. I asked her if the other room was open so I could go in there, and she went all crazy on me. Saying I was a bad daughter and that if she were my mom...blah blah blah...LIES!!!!! Nelly, super confused by this, looks around this girl to me and I mouth the words, "All lies! She's lying." Nelly moves over to me and says what happened, I told her she accused me of being a racist because I asked her to leave the dressing room and those rooms are for patients only. Nelly was like, this is all a misunderstanding, let's calm down. we can't have you upset going into the treatment, this isn't right...blah, blah, blah, let me get you a glass of water. I again say, "This girl really is upsetting me, I really need her to wait out in the outer waiting room. I can't be in the same room with her." The girl sits and smirks, and goes back to her texting, probably telling all of her friends what a "racist bitch" I am. Her defense to being in the dressing room was that no one was there to use them. L-A-M-E! Well, I came in and wanted to use the dressing room. period. end of story. She should have said, "Oh, no, go ahead, I'm sorry. Here you go." That would have ended it, but she just had to be flippant, and my sense of Right and Wrong kicked in and off I went; I took her bait like a very hungry fishy.

The techs went off, I sat there for about 30 seconds and said, "I wish you'd just go back to the dressing room, so I can't see you. You have really upset me with the things that you said." She told me she wouldn't move, with a sick twisted smirk. I rose and said, "I can't even be in the same room with you, you make me ill." I left for the bathroom and there I stayed until Nelly came to get me. I let the cold water run over my wrists the whole time, I found it hard to breathe, the tears stung my face, and the sobs wouldn't stop. The Racist comment I could let go, the "Glad you have Breast Cancer" comment, no, indefensible, rude, MEAN, MEAN beyond bounds. Did I deserve Cancer, no. The fact that someone was glad that I had it? PAINFUL.

I cried throughout my treatment, they took me in before a woman who was in the room witnessing the whole thing, just so I could leave and go home; get out of there. The girls were so kind to me, even the woman who gave up her slot so I could go ahead of her, kind. I know I would have done the same if it had been she in my shoes. I'm sure the teen's mother would have smacked her upside the head if she knew, but to be sure, the teen was giving her "truth" false as it were and the mother, being a mother, believed her. When I got off the table, I told Nelly the girl said she was glad that I had breast cancer; that was why I was so upset. The look of shock on her face said it all; I was justified to be shaken by her mean words. She promised to speak to the mother about her daughter's behavior. I said, "I just want to never see her again, so if the mom is scheduled tomorrow next to me, please move me to another time." Nelly assured me I was not a racist, she would have known the first day, that I was nothing close to that. That I was a very good person, and not let what the girl said hurt me. I appreciate that, but the words were said, and they were spilled with venom, and venom burns, worse than any amount of radiation. Words cannot be taken back once spilled. They hang in the air like poisonous gas, putrid and heavy, choking the good out of the room. She may not have meant what she said, but they were said; too late to take back, an apology is not an option at this point.

I changed and as I was leaving the room, the older Jewish lady, who had witnessed the whole mess, said to me, "Don't let her ruin your day." This woman NEVER came to my defense through it all, I'm sure because she was frightened and confused as well. I looked at her and said, "I'll try, I'll really try." But the pain in my heart, on my soul screamed in agony. I went through the door to the waiting area where Ed looked up with a big happy smile on his face and all I could do was say, "I have to get out of here, now. I'll meet you upstairs." The elevator, thankfully, was right there, I jumped on and escaped the Hell below where I sat down and burst into tears. Marie, one of my techs was just entering the building for work and saw me there crying. She came over and placed a gentle hand on my shoulder and asked with concern etched on her face if I was alright. I told her what had happened, and she too was shocked by what she heard. She apologized for my bad morning and promised to not have it repeat tomorrow on my last day of radiation. "Don't worry, we'll keep you safe. It will be fine tomorrow, I promise" While speaking with her, Ed arrived upstairs, and only heard the edge of what had happened, and that was all he needed to hear. Edward means Protector. My protector turned on his heel and headed straight back downstairs and got the Nurse Practitioner, who in turn got the Director of Radiation and brought them to me, where I told them, once again, what had happened. They both agreed that no one but patients should be in the dressing rooms. That needs to be made clear, and they assured me that this girl will be banned from the inner waiting area from now on. They don't need her spewing her hatred on women who need to focus on getting better.

I understand she is probably a young girl afraid for her mom, and is acting out to the easy targets of this world, but this doesn't excuse her for her behavior, nor does it give her a pass to be nasty. It is her Karma, she has etched her mean words onto her Karma and she will have to work hard to expunge those words from her Karma. She not only insulted me with her mean words, she insulted her mother. I'm certain this woman upon hearing what her daughter said (glad I got cancer) she will be mortified and have words with her daughter.

Children act one way with their parents when out in public; nice, polite, angelic. When parents aren't there, they behave the way they do in school; if a mean girl, they embrace it with all of their being. This girl is a MEAN GIRL. I know deep down in my soul that she is, and the mother is unaware. I know this because she immediately started in with changing the truth, painting the other person (me) in an unsavory light. Doing whatever she could to take the spot light off of her. It backfired on her only because the things she said about me didn't fit who I am known to be. She needs help. She is obviously angry, and deeply troubled. I'd hate to be her teachers, because I sure felt like a substitute teacher with her. She got lippy and defensive because she knew she was in the wrong. She didn't realize that I am a mom, and onto this tactic. It doesn't fly with me.

As for the racist comment...if I had been an African-American would she have accused me of being a racist? Or would she simply have pushed past as she did me (the white woman) and taken a sit and twitted to her friends about the bitch that made her get up from the only comfortable seat in the place?

Who is the racist? I'm white there-fore a "racist"? I don't see color, and I don't judge on color, I only see behavior and judge on behavior.

I now feel the need to sit in front of my gohonzon and chant diamoko for this girl and her mom. To chant for her happiness and for her mom to get 100% healthy. She seems so angry and resentful. So today, my diamoko will be for this girl with the braces and the hot pink phone that burns with hate-filled texts; I truly hope she finds peace within her soul and finds a way to clear her Karma. I truly do.

I'm fine, especially now that I've written it off of my soul here. Tomorrow is my last radiation treatment, I have to get chocolates for my gals in the radiation department to thank them for being so good to me. I will miss them, but not the machine.

I march on down the road to victory against Cancer, and this incident, like the dreary day I woke to, are mere hiccups in the road. I've already won. This Mean Girl Teen was Winter trying to hold on, like the dreariness of the day, but Spring is coming, and Winter must go away, and so it shall, soon enough.

Nite!

Light and Love!

Melissa

THE LAST WEEK OF RADIATION

March 8, 2010 Monday

This is the last week of my temporary full-time job, radiation. I only have 5 more treatments, and this is so encouraging! By 1pm I'll only have 4 more treatments to go. Cathy and I are celebrating this last week of treatment by going to see Johnny Depp in Alice in Wonderland. Sigh! I can't explain why I love this guy, I just do. He is unafraid to tackle anything. From the simple understated performance to the Out-of-this-world/over-the-top performance, Johnny just knows how to take you away from your world. I can't wait!

If you had asked me on August 27th if I would be this happy on this day, I would have decked you. But today, I'm happy. this is almost behind me. I'm not only getting my hair back, I'm getting my life back. Everyday I wake up and look in the mirror and see more hair. My son commented that my hair is getting thicker. It must be, because he noticed it. Everyday I wake up and feel better, stronger, and I can go a little bit further in my walks. I still tire easily, but it's taking longer to tire. This last week will be the true test, as I understand that the radiation will exhaust me, zap me of energy. So I'm prepared for a slide backwards in energy. My skin will get redder, and I hope won't peel. There is hardening of the radiated breast, but with time I plan on getting the tissue to loosen once again. My scars ache, but this will pass with time as well.

Today is a beautiful day. Ed will drive me and Cathy up to the Center for my treatment and then we will hit the cinema, and I want to walk home...but we shall see how I feel after the movie.

Tonight I go to Carnegie Hall with my dear friend Joe. We will see another dear friend, Kent, conduct. What a way to start the week; with great celebration I say goodbye, one by one to the poison and turn my life into medicine. I was inspired yesterday by stories of hope at Soka Spirit and tonight I will be inspired by great talent. My daughter is being inspired by the great beauty of Hawaii, and my husband and son will be inspired by working together on a reading of a screenplay tomorrow night at Adrien Grenier's home. This is a week of great hope. New beginnings, and to top it all off, Spring is arriving just when we were all at the breaking point of hopelessness with Winter. The Sun is out, the skies are blue, the temperatures are in the high 50's, and New Yorkers are all out strolling.

Yes, this is a week of great hope and inspiration.

Make it the best week so far this year. Go out and inspire someone. Encourage everyone to reach for their dreams. Make sure to share your love. Remember, life may be full of ups and downs, but it's up to you with how you cope. Choose to be positive.

Nite!

Light and Love!

Melissa

WHAT A BEAUTIFUL DAY!

March 7, 2010 Sunday

I may not be able to sleep, but with days this beautiful, who cares!?

My hot flashes continue on and oddly I'm not getting use to them. Go figure. They come without warning, they usually hit at the least opportune moments, and mine seem to go on forever!

Yesterday was spent helping out my daughter who at one point thought that she had lost ALL of her meds. This is not a good thing at all. Also, hysterical over the fact that her boyfriend could not find his wallet nor his passport, so it was looking as if he would not get to go to Hawaii. What is it about moms that make the seemingly impossible possible? It took a long time to calm things down before she would believe me when I told her Matt would find at least his passport. I hung up the phone and was getting ready to call the pharmacy and the phone rang again ~ he found his passport. I'm like a magic charm. Perhaps there ought to be a prayer to Saint Melissa, the patron saints of kids who've lost important stuff? It could go something like this..."I'm sorry to be such a pain, but I've lost the important thing Mom told me not to lose, Please, can you help me find it? I promise I'll be better at taking care of my IMPORTANT stuff from now on." Of course after I made arrangements to have all of her meds replaced, she texts me with the good news that the medication was found. I told her to pick up the meds anyway that way she has them. She needed to refill some of them anyway. She agreed, and then once I was in bed fast asleep (a rarity) she calls and says, (and I'm not kidding), "Mom, please don't be mad at me. I thought the Pharmacy was open every night until 8pm. So I went shopping for bikini tops before going for the Rx's, and we went to the pharmacy and it was closed." ARE YOU KIDDING ME???!!! How can I be mad at her? All I could do was laugh at what she thought was more important. It was not bikini tops, or meds; it was GAS! It would have wasted gas to go to the pharmacy first and then the Mall. She was already near the Mall, so time and gas would have been wasted going back and forth.

W-H-A-T-E-V-E-R!! I give up. So she goes to Hawaii with a shortage of meds for the week. I walk away with arms thrown up it in frustration. It is what it is, kids are kids, not adults! Nothing ever changes, nothing. She still needs me and I'm damned because I don't live out there when she needs me to be her personal assistant.

She called this morning and the car service went to the wrong address about a half and hour away from where she lives. KARMA! This is her karma. Karma will continue to get in the way of her pleasure until she steps up and owns her medical condition. So I chanted for her last night, I chanted for her this morning. She made the plane, she is on her way to Hawaii, she will have a blast shooting there and even more fun taking a few extra days to relax. She'll forget the trauma of losing her meds for a few hours, Matt's loss of wallet and passport for a while, and even that the car went to the wrong place. She's earned the peace of mind. That's what mothers are for; to clear away the mess. We spent their whole entire growing up years cleaning up the mess they made. Some days they would follow you around messing up where you just finished cleaning. Yesterday was one of those days. Makes me smile that she still needs me, I'm that important, that I am Saint Mommy, and I can find or fix anything in her mind.

So I go to my day, a beautiful Sun-filled day, a Sunday, a warm day (54 degrees), and I Thank God I have a daughter who stills needs me. I'm worn out, but I refuse to let it take me down today. Spring is nearer and nearer, and I, for one, intend to welcome it with open arms.

Nite!

Light and Love!

Melissa

SIGNS OF SPRING

March 6, 2010 Saturday

I can't believe it's been since Wednesday that I posted a blog. The week got away from me.

Saturday is here, and I woke up to it at 4am, rather, I gave up trying to sleep at 4am. Hot flashes have become the bane of my existence these days. First, I freeze! then I overheat. Throw the covers off of me as if they are on fire, rip off the sweater, grab the glass of water to try to get rid of the dry mouth, next grab the tissue box and start mopping up the sweat. My skin flushes all over and most of all on my chest where the radiation has hit. Overheating makes my chest itch, so next I'll go to the bathroom and apply the Calendula lotion. It doesn't help with the itching, but it is cool. After the bathroom, I head to the kitchen and literally stick my head in the freezer. This ritual goes on for about 10- minutes. Then I'm awake. I go back to bed, my bedclothes slightly damp, and put my head down on the pillow, only to have to turn it over because it's damp and cold now. Then I get cold, and pile the bedding over me, and try to sleep. I drift off, and within the hour the routine starts up all over again. This morning I gave up on the routine and headed out to the living room. So here I've been since 4am surfing the web, playing Farmville, Zoo, etc...I fell asleep for an hour only to wake with a start thinking it was a school day. The house is all quiet, only Niki the cat is up with me. She sits on the new office chair we acquired when someone on our floor got rid of it, no doubt to upgrade to a fancier chair, because there is not one thing wrong with it. Niki sits and grooms and stares at the ceiling while I tap away at the keyboard. The weather man declares a 50 degree heat wave this weekend and this makes me so happy. Spring is on the way, for NYC and for me. My personal Winter is almost over, and Spring always follows Winter.

I finished my second week of radiation and now I'm 2/3 of the way done with it. I'm so glad I chose to do the Phase III trial. One more week and I can walk away from the bed that I pretend to be my "tanning bed". My burn is not bad. You can hardly tell I have a burn. Only when I flash can you really see it. I get the weekend off, and so I'll be happy. No weird positions making my neck and shoulder ache. I think of the other women who are at the center that must go on for the 6 weeks, I've seen the burns they carry. I'm hopeful that this trial I'm in will be able to reduce the amount of time women will have to spend on the "tanning bed". It makes so much sense to expose a woman's body this way. Only my breast gets the exposure. I lay face down with my breast through a cut out in the bed. The only draw back is the positioning of the neck and arms. But it's doable.

Today, I go to my Sophia meeting, a book club on The Human Revolution...then I meet Cathy to see Alice in Wonderland. Ah! Johnny Depp. I can't wait to walk up to Union Square in the sunshine and the warmth of 50 degree weather. It will be a long day, and I start it already tired, but I'm hopeful that the weather will give me energy.

My daughter flies to Hawaii tomorrow morning, and I wish I could go with her, just to soak up the warmth. She's grown up so fast, I miss the little girl that would curl up on my lap and sing with me, and when she'd fall asleep her curls would mash up in moist ringlets against her skin. Now all I have is my 6' son who snuggles up next to me and crushes me; so loving but much like Marmaduke. Soon that will be gone, too, and so I cling to the moments of snuggling even when it's uncomfortable, because I know those moments will be gone in a blink of an eye.

I ramble now. A clear sign of being over-tired.

Spring is coming, one more week of radiation, 12 more herceptin treatments and soon this will be done. I'll look back and think, "I made it."

Enjoy the weekend!

Nite!

Light and Love!

Melissa

PERSONAL STRUGGLE

March 3, 2010 Wednesday

I started the week off so well. So happy, full of joy, ready to conquer the week. Physically that is not a problem. My treatment is not the issue. The frustrations of being a human being with expectations is.

Motherhood is difficult even at the best of times. But when faced with the challenge of battling cancer and having a child 3,000 miles away from you is really difficult. I let my expectations get the best of me. I thought that all the years of support and love and worry and fighting for my eldest's health and well being had earned me care and concern. To be specific, phone calls from the Coast that involved words of concern for me. For months I've gotten only a handful of those calls, and not to say my daughter is an uncaring individual would be unfair to her. She does care, and I know she loves me deeply. that said she is caught up in being 19 and having success that people in their late 20's can only hope to enjoy. So couple that success with being 19 (the age of self-centeredness) I get little love. I get phone calls of need, angst, even frustration. The kind of calls I simply can't handle right now. What I need to get are calls of excitement, joy, and love. The random call to check in on me, to see how I'm doing. The call that says with excitement, "I'm going to Hawaii!!! The show is being shot there for a week. I want to stay a few days after shooting is done, is that okay?" Instead, I found out she was shooting the episode in Hawaii through reading the trade papers online. Then to add insult to injury I get a FB post from Sarah's boyfriend's mother, "Isn't it exciting that our kids are going to Hawaii this coming week?"

That post was such a slap in my face. The boyfriend's mother had been told, yet I was left out. I know it was expectation that took me to my knees, but none-the-less, it hurt deeply. The boyfriend's mother had no way of knowing I hadn't been told; she had done nothing wrong in sharing her excitement for them. How often does one get to go to Hawaii? Actually, I had chanted for Sarah to get to go to Hawaii, not for Modern Family but for another project she was hoping to get that shoots in Hawaii. So for me it was salt in an already festering wound.

Texts went unanswered. Voice mail went unanswered. Email went unanswered. Finally after days of being ignored she finally called. The call started out fine, but quickly devolved into pain and frustration. Not just about the trip; the trip was only the catalyst that brought up my feelings of neglect. She was simply not aware of her neglect. My pain was raw, real, and mean. I text her everyday, and she never responds. All I ask for is the acknowledgement of the letter 'k'. I tell her that now when my phone rings and I see her face pop up, I think, "Now what? What has gone wrong this time? What does she need now?" not what should really happen when I see her face ~ "It's Sarah! Yeah!!! I wonder what wonderful thing is happening now!" Her defense was that she "forgets" that I'm fighting Cancer because she is 3,000 miles away. That is her way of dealing with everything hard. Forget it, deny it, avoid it. That is fine if she wants to do that with her shit, but not okay when it comes to me. I NEED her to be concerned. I NEED her to care and call and check in. I NEED her to send a text that says "Thinking of you" "I luv u" "How r u" Not everyday, once a week would be nice. It doesn't take much to make me happy.

I spent Monday evening crying and desolate. Not where I wanted to be, and yet I let myself fall into the pit of self pity. I thought I was over it Tuesday morning; I wasn't. I cried all morning and my day reflected my mood with obstacles left and right. My mood, sour and bitter. Thank goodness for the Study Meeting Tuesday night. I went I chanted I listened and I learned. I realized that my "fundamental darkness" took the form of my daughter and tricked me into believing that I was not worthy of being a mom to Sarah. I tricked myself into thinking she didn't care, because that is my biggest fear. Losing her. When you love as deeply as I do, it is easy to get hurt by the one you love the most. There is something about your first born; that bond that makes it hard to let go. The fact that Sarah was born with so many medical issues only made that bond even more strong. For so many of her formative years it really was Sarah and Mommy against the World. Part of her clings to that and part of her desires to break free. I want her to break free of the "do for me" and keep the closeness part.

My wish is to have more phone calls that revolve around what is going on that is fun and exciting in her life and less of the "mommy as heavy". "did you go to get your bloods done? did you take your aranesp? Have you gone over to so and so's to get the boxes you left there when you moved? Have you done this, have you done that?, etc, etc, etc" It is a two way street. I won't ask if I know those things are happening.

So expectation has reared it's ugly head again, and this time it's on me.

I'm half way done with radiation, today is #8 of 15. My skin is holding up, my breast tissue feels like it is getting harder. Don't like that, but I'm doing my exercises to keep flexibility. I use my lotion. My medical has become the status quo, my "normal". What will I do when it's over? Will I be depressed? or move on with joy? I hope for the latter of the two.

Tired but hanging in there.

Nite!

Light and Love!

Melissa

WEEK 2 RADIATION

March 1, 2010 Monday

Where has the year gone???? I can't believe it's March already. Time is flying by and so is treatment. Don't get me wrong, I'm not upset about time moving so quickly, it's just been a blur...Chemo brain has its benefits.

My weekend was busy. I de-cluttered, I paid bills. While Ed was busy putting in rolling shelves into the broom closet that had become a wasted space in the kitchen. Now I have a wonderful closet with 4 pull out drawers to hold all the canned and dry goods. HAPPY HAPPY HAPPY. We are busy getting the East wall in our living room ready to receive a wall unit from our neighbor (he passed away and his children offered the wall unit to us.) So our living room will soon take on a homier feel. Before that happens we must, once more, dive into the chaos of boxes of books as we move our Baker's shelf unit to its rightful place in the kitchen, and figure out where to put my corner at-home office, file cabinets, and my cedar chest.

Sunday was spent at the Culture Center where I chanted A LOT! It started in the morning, and at 1 pm went back to the Center to proudly watch my BFF Cathy receive her gohonzon. She started out chanting in support of me and what started as support quickly turned to benefits for Cathy. Her inner spirit changed and she felt more at ease with life, she joined a gym, got a trainer, and is preparing to quit smoking. I see how much happier she is, now that she has decided that she is worth all the effort. I'm so proud of her. She is the most giving person I know and no one deserves Joy more than she does. So after a Day full of diamoku, Ed, Ian and I headed over to Rose and Roy's home for dinner where we spent a lovely evening with dear friends. A "Normal" weekend. We got home to catch some of the closing ceremonies of the Winter Olympics, and we sat there scratching our heads at how bad the ceremony was. It was worse than a cheesy Vegas/Disney show. Canada has a lot of fabulous talent, I don't want to take away from that, but I expected something different, something classier. We only watched for a little bit before we lost interest for lack of "awe". I fell asleep anyway, not so new....

This morning I headed up to Radiation and was met with the quickest session to date. Everything just fell right into place. I arrived right on time, was ushered back right away. As soon as I changed into my robe and sat down I was called into the treatment room before I could even open my book. I lay down on the table and somehow laid down in the perfect place. I didn't need to skooch down or up or over. The treatment was over before I could think about it and I was out of there within 7 minutes flat. I attribute that to all the great diamoku I did yesterday. (chanting) I can only hope that the rest of the week will go as well.

I have finished my first week of three radiation treatments. I have finished 6 of 15 treatments. I am 1/3 of the way through with radiation. My skin is still holding up, the redness hasn't gotten ugly yet, and I only have a tiny bit of irritation of the skin. If wool touches it, it itches a lot. So cotton is the fabric of choice. I hope Spring comes soon, because I am so ready to move out of my "Winter".

Cancer is Winter

I fight for the coming Spring

My soul is Joyful

Have a beautiful Joy filled week. I plan on it.

Nite!

Love and Light!

Melissa