Corinne's Multiple Myeloma News

March 2009 Update--Already three years

2009-03-18T12:48:00.000-07:00

On March 17th, I thought I would be starting a Phase 2 clinical trial at St Vincent’s Comprehensive Cancer Center. Unfortunately, I am not a candidate for the trial since all my test results didn’t meet the protocol guidelines. While I feel great, my MM markers insist they be assaulted with some weapon in the MM arsenal. I will begin treatment next week with an oral dose of Thalidomide, requiring only monthly follow-ups.

As spring approaches once again, I have made some fundraising commitments. I am reaching out to you even in this challenging year of financial upheaval because it is the work of the Multiple Myeloma Research Foundation-- their support of new treatments and partnerships with drug companies that continue to keep me and MM patients alive. When I was diagnosed in March 2006, I was told the average life expectancy was two-three years. Now three years later, I feel vibrant and strong, having had the benefit of two drugs the MMRF helped bring to market in the last two and a half years.

On Tuesday, May 5th at the 7th annual MMRF Laugh for Life Benefit will be at BB King in New York City. I am honored to serve as a committee member for this very special event, a night that will be filled with laughter—for me some of the best medicine for whatever ails you. Tickets for this event are $250.

On June 7, I will walk in the 5K Race for Research in New Canaan, Ct as I did last year with my sister Donna. We’d love to have a bigger team this year so let me know if you can join us. If you can't join us, please sponsor our walk.

Finally on August 30, Donna and I will participate in the Half Marathon in NYC. We are both very excited about training for this event as well as garnering your support.

This is a challenging time for all of us in so many ways. We are facing a myriad of unexpected changes: to our bodies, our finances, our approaches to life… I am grateful for this opportunity to raise awareness as well as money for MM. My involvement bolsters my hopefulness about the future. I am proud to say that 95% of the funds raised by the MMRF go directly to research. These research grants provide the best hope for patients with this to date incurable disease. It is through the development of these new drugs that the word incurable can be replaced with a far more benign word like chronic as researchers continue to pursue the cure. Finally these same research dollars will lead to development of new treatment options for 19 other types of cancer.

I appreciate all of the ways in which you have supported me through this experience. I have needed all kinds of support and am delighted to say that you have shown up for me in so many amazing ways.

Feel free to email or call if you have any questions about the events. I will keep you posted on the timetables for your donations. I’d love to have you join me in New Canaan, Ct on June 7th for Race for Research.

With love and gratitude,

Corinne

Things to consider upon sleeping

2008-11-22T07:41:00.000-08:00

Things to Remember Upon Sleeping

Enter the multiplex
of your mind

Lovingly turn off
the projectors
in each theater

Extinguish every light

Hold a memory of tenderness til it feels like the satin corner of your baby blanket

Then
let it go

Slowly
drift
out of your mind
letting only
the tenderness
resonate
in your body
until morning

The Meaning of Life

2008-11-22T07:32:00.000-08:00

I’ve doing thinking a lot about faith these days—faith during dark times—and have been asking many people how they define it, how it nurtures them when they feel lost. Quality of life is important and when my curiosity and get and go are dampened with no end in sight, I’d like my higher power, my guiding light to ease my journey.

The meaning of life—something to reflect on—sounds flippant but the meaning of life is to live it—with integrity—to see those around you, the community, the world and be a part of it; to add your heartbeat to the collective unconsciousness, raising its vibration; to understand who you are; to consider your own evolution and encourage yourself and others to follow their bliss; to know your body and explore its possibilities; to find some balance; to laugh out loud; to both nurture and rescue yourself; and to accept yourself and those around you as is; and finally to relax without judgment. Interesting, all the definitions are verbs. Meaning of life is to be.

Please share your thoughts to help me expand this. Help me open my eyes and my heart.

2008-06-15T04:11:00.000-07:00

Ah, when they think lovely thoughts!

all that is good and beautiful has greeted me at work for the past five years!

Life affirming women of the Upper West Side

The Women of great neck who'd walk in your shoes, make you laugh and keep you safe. Find some of your own!

2008-06-15T03:17:00.001-07:00

WAITING FOR DR COMENZO

Well, it could be a little like waiting for Godot especially if you didn’t bring the necessary distractions to stave off ontological insecurity. Usually I have some company for a visit, but I was prepared with the next two books for my book group. The first hour went quickly. I read quietly. Then a man and his wife and son sat down next to an older gentleman who was ready to talk. The younger man said he was checking in for his transplant and the older guy Fitz chimed in, “those rooms are beautiful.” I couldn’t resist. I told them I was just out of the hospital for two weeks after my second transplant. I told him the first time I had a view of the Fifty Ninth Street Bridge and that I had decorated my room reminiscent of college. The nurse came for him and he was off for his adventure.
Fitz moved over to sit next to me and regale me with stories of his boxing career, his early morning adventures, delivering milk with the milkman in his horse driven buggy. He told me he lived and Howard Beach and told me about the way things were with Al Capone-“If you can’t do the job right, don’t do the job!’ Johnny Blue Eyes The fate of Jimmy Hoffa Just how many people were in on the fix? He talked nonstop for about two hours before he was called in, but not before he let me feel his bicep-quite impressive and amazing for an 80 year old man and he showed me some pump on his chest the was a vestige of his gallbladder surgery of two weeks ago. So the first three hours of waiting for Dr. C passed quickly. I read for another hour and then the nurse called my name. There would be another hour to wait. I was exhausted! When I realized it was six o’clock and I would never make my 6:30 therapy app’t, I actually started to cry, the toddlers do when they’re overtired ad refuse to sleep.
I told the nurse my problem. She said he’d be in soon and he asked that I lie down. Like those toddlers too cranky for sleep who sometimes end up sleeping by putting their head down while they’re still standing up, I wiggled the back of my head into the pillow and dozed off until Dr Comenzo came in.

I have never had a doctor who kept me waiting like this before. When I was pregnant with my son, the most popular OBGYN (handsome with an Italian accent) always had a three-hour wait. I saw Dr Kraft who was wonderful and I always thought he looked like Superman, but I didn’t wait forever.
Whenever Dr Comenzo comes into the examination room, I feel that his attention is completed focused on me. I watch his mind sort through the data, patiently answering all my questions. I forgive him; I empathize that his day must be incredibly strenuous. He checks my heart rate and tells me that it’s elevated and that I’m dehydrated. He listened to the course of events over the last few days. He tells me that an elevated heart rate increases anxiety. I tell him that I have felt a tension in my chest-a nervousness. I told him I don’t generally feel anxious, dark dramatic depression is my specialty. He laughs and says you don’t look very dark today. When I first came home I was putting in 19 hours a day. You need to get out more I want you to come into the hospital tomorrow for hydration and again on Fri and next week too. This will pull you through the dehydration. Everything else is wonderful. The results of the bone marrow biopsy before the second transplant were perfect-no cancer could be detected.
I asked him when I could fly and he said August-finally free!
I have felt dehydrated before. After a long bicycle ride or an extensive walk, so I can home and drank water—a lot of water. Now one month after transplant #2, my doctor notes that my heart rate is 118 as opposed to its usual 70. He says I have to come back to the hospital twice a week for the next two weeks for hydration. I guess it’s not just drinking water; I’ll need an IV.
The receptionist made the four appointments for me and said, “You know the hydration takes three hours plus wait time and you can only use one hand. “It’s all about the iPod,” I said.

2008-06-15T03:16:00.000-07:00

Josh's GI Jane

HOME AGAIN

Time for healing and Josh has arrived on my doorstep=no apologies-he’s broke and so he insinuate himself in my household It’s just a matter of time before things blow up but in the meantime there is no money, no sources other than me.Josh has always been an advocate of tough love, feeling if he pampered me, I slip down the dark rabbit hoile permanently. He’s a “Get up and walk it off. Then go back out into the field.” It does really inspire me, piss me off, but inspire me. He did do many things to help, but kept the under wraps so I wouldn’t rely on it.
I still can’t get any chores down, shopping, dishes, ways to make things easier for the woman who is providing. How can I recover in a setting where I am not the mistress of my domain? Maybe it’s the story of cancer patient and the way the world changed around her in a short time.
How do you treat the ones you love when they have cancer? There are those people who need you to be normal for them and often you agree this for both your benefits.
And there are those that want to help you keep you spirits up. They provide food and books and distractions. Life is the closest to comfort here.
Then there are those who are nervous in your presence because they think you’re a victim of the disease and that makes them uncomfortable. They fear what would happen if they were the patients. Some even worry it’s contagious.
I handed pick my own support group. Picked the people who will do the best job a job that gets you out of bed and into the world.

2008-06-15T03:15:00.002-07:00

EXITING THE HOSPITAL

` The second time everything was different whereas I felt like a girl gone off to college filling her dorm room to making it her own, this time I felt like a prisoner and wanted to leave as soon as I could swallow two liters of fluid. Once the doctor gave me the nod for Thursday, I made it my life’s work to drink…and throw up and drink some more. I pleaded with my sisters to take all of my things home so there would be no doubt that I’d be leaving. I slept in my clothes all quite immature for a woman of 55,but I felt as if I had some control of myself.
When I woke I found that I had soiled my pants and I washed my jeans in the sink. The doctors made rounds and agreed that I could go home. More than anything I wanted to simply walk out the door on my own and take a cab to my apt. Lewis agreed to pick me up and when he arrived, the waiting game began. My drugs hadn’t arrived from the pharmacy. The nurses were busy, understaffed. Patients trying to escape were supposed to have patience. I was crazed.
The nurse who was caring for me found some scrubs for me to wear home and she suggested that I not put them on until I was ready to walk out the door-good advice indeed.
I asked Lewis to check in with the pharmacy to see just where the drugs were and to get the car-more need for control. He called me from the pharmacy-a little espionage-the drugs had been sent up to the 8th floor. An escort had taken them up over a half an hour ago. When I called for my nurse, she didn’t come in. Meagan, a nurse who had taken care of me during my last transplant, came in and told me she would help me with my discharge. She chatted with me about my sisters and my children and reviewed my home care. Lewis was waiting for me in the underground parking lot. The nurse’s aid that would be taking me down told me that I could only go to the front entrance. It was not policy! I dialed my cell phone sure that Lewis wouldn’t have any service underground. Fortunately he picked up and patiently did what I asked. I’m sure he thought I was nuts as I entered his car in my newly acquired oversized scrubs. Within moments, I needed the bathroom-my bowels were ready to explode! Lewis had left his wallet home something that was totally out of character and said there was no way he was speeding and I could just jump out at the next fast food restaurant. It was clear he had had enough of this.

2008-06-15T03:15:00.001-07:00

THE SECOND TRANSPLANT

I’m less pissed off now that I’m in the hospital-there’s nothing in my control-all right, not much-they still can’t make up their mind one dose or two of chemo
New rules-nasal and anal swabbing in case there was any modicum of privacy left. Maybe I can stick my butt up in the air. Francis already inspected my hemorrhoids and reported they were quite benign. Amazing what becomes good information. Sitting for six hours in the past meant great concert seats or a layover in Europe waiting for a charter flight that may or may not have left without me.
Now in my 50’s, it means checking into your transplant suite. The first time I was admitted to the hospital, I treated my room like my college dorm and filled it with many things that I loved. I felt cheerful most of the time. So far I’m just irritated.
I want to write something but my drama isn’t dramatic, my humor isn’t funny and my fairytale isn’t light.
This return from the hospital sends me to my room this time instead of planting me in on the couch in front of the TV. Maybe I’ll watch less TV and hole out in here until the coast is clear.
Now this second stay in the hospital was a replica of the first in terms of medical response, but I had no heart for it I had no heart to be that me I needed quiet I felt a smoldering rage I was disappointed by nearly everyone and everything and asked for no visitors infrequently answered the phone I didn’t want to put on a happy face nor did I want to complain to too many people a brave girl, remarkable woman blah. Blah
I missed Jerry a lot not that I had any illusion that if he were there I would have been disappointed, but it was that unincorporated memory-maybe sense memory that can fill my body with a feeling it runs through my blood stream some would call it a chemical imbalance it can be a pain but the feelings I feel are so vivid they have color and temperature cause me to release my muscles and surrender to the feeling not fear it, not fiercely protect myself I could always rest and rejuvenate with Jerry until things went really bad.
I want to feel that kind of love again I need a little more codependence I know it’s not in vogue and that I should be in recovery looking for healthy choices for a man who won’t pander to my illness I don’t know how to ask for it or how to find it who has the time I long for love.
All the voices that I spin around me trying to tell me what to say-can I fly right behind you and you can take me way just while I crying thru my typing Nora Jones is singing about what I want. I certainly can’t get it without giving up my anger and self-loathing.

2008-06-15T03:13:00.000-07:00

Alien hairdo!

My room at Sloan

My CarePages

Care Pages (www.carepages.com) is a website devoted to patents and caregivers so they can provide updates to friends and family and get lots of support in return. Jessica called to tell me about them-said she knew someone who used it and it would be a great way of keeping people updated without a million phone calls. The Care Pages follow:
January 22, 2007 at 12:10 PM EST
Hi Family and Friends,
Jessica sent me to this website so that I could update you here. Let's see how it works. This learning something new all the time is harder than it used to be.
Because of the RSV virus, I haven't gotten a reprieve til Thurs when I'll be swabbed again to check for germs. If all goes well, I'll be in the hospital by the afternoon.
No flowers, no fruit-there's germs Just send love.
Regards,
Corinne
January 23, 2007 at 06:36 AM EST
Honestly, so far the worst part of this experience is the neutropinic (I think) diet which boils down to no take-out, no restaurant dining. I devised one of my harebrained schemes, which didn't turn out to be so harebrained. Other people actually do this. as you may know this is restaurant week and I'm not working. Sharon and Lynn invited me to join them at Cafe Boulud. Daniel is the chef-very chi-chi restaurant- 76th and Madison. I called and asked if I could bring my own food. The hostess was very accommodating. When I arrived the maitre d' came over to chat. He told me the diet showed a lot of discipline and that he admired me. He asked if there was anything he might have in the restaurant that I could enjoy. I got a bottle of Pellegrino, a bowl, a spoon and a glass (Maybe in the future I'll have to bring my own?) I told him I needed to prepare my food and he nodded. I took out some blueberry yogurt, dried cranberries and a nut mix. It was very fragrant. I poured the Pellegrino into a wine glass and I was ready. Sharon and Lynn had a Bon Apetit photo quality lunch-creamed broccoli soup w/ truffles, broiled scallops on a hollandaise sauce and a chocolate walnut tart w/ homemade vanilla ice cream. As is with all restaurants of this sort the portions are tiny, so I was still eating my yogurt when they had finished dessert. It was really glamorous and fun. The maitre d' came by to tell me there was a chocolate shop on the next block and he suggested I stop there for a treat. Actually I was quite full from a full bottle of Pellegrino and the yogurt mix. I had no idea if they were gong to charge me the prix fix for "my seating" and I was prepared to pay it to see how the experience would be for future reference. No charge-just a bill for water. So that was my three-hour activity for the day.
January 24, 2007 at 01:31 PM EST
Well, today I got new hair. Between seeing the movies, Marie Antoinette and Dream Girls, I got a lot of ideas. I was tempted to go for the Barbie look, but I thought I might not recognize myself so I scooped up some long curly red locks. I wore it home on the bus. Now you all know that I like hats and this is one lovely hat. Maggie, the woman who helped me took some pictures of me in three different styles. Once I get them into the computer, I'll post them.
I will answer all of you. I'm really loving your comments. I have to say I'm so tempted to give a journal assignment. I haven't had any writing to read in awhile.
January 25, 2007 at 01:49 PM EST
Well, I'm back at home. There was a scheduling snafu and I have my reservation for Monday.
January 26, 2007 at 08:38 AM EST
My horoscope has been right on of late. All right, for you skeptics laugh all you want.
Never doubt your instincts especially on days like today when your ruling planet Neptune is so strong in the sky. If your inner voice tells you to take a certain action today but you decide to play it safe you'll regret it later when you see what you could have gained from being more adventurous.
January 27, 2007 at 02:52 PM EST
I traipsed to the Brooklyn Museum this morning to the Mueck exhibit of life-like sculptures-some that filled an entire room and others that you could pick up and slip into your backpack. He captured such emotion in the facial expressions, the positions of the bodies and their gestures. Sperber's work is comprised of spools of thread that when viewed thru a small "crystal ball" that is mounted on a pole which brings it to eye level some three feet away from the spools, what you see turns out to be the Mona Lisa or the Last Supper upside down
Walton Ford paints gigantic watercolors of animals that reflect both the society of people and the ethos of the animals and often the point at which they intersect.
If you can't go to the museum, you can visit the website and get a glimpse of the work. Sorry, a teacher never stops.
It's funny strolling through the Brooklyn Museum. My mom used to take my sisters and me there when we were little (alternating with the zoo and the Botanical Gardens) That's where I first decided it would have been grand to be Cleopatra.
Just another day in paradise
So what's left of my hair goes. I always wanted to see how I'd look with Sigourney Weaver's buzz in Aliens.
January 28, 2007 at 06:39 AM EST
These extra days off before my trip to the hospital have been filled with joy. Last night I got to share the happiness of Scot and Frank at their engagement party. This time I packed stuffed mushrooms, spanikopita and fresh pineapple. I was fine until I saw those scallops wrapped in bacon.
I saw so many people I conjure up in my mind as I visit school from home.
January 29, 2007 at 10:53 PM EST
It's been a busy day. In anticipation, I was up for good at 3:30-just a bit earlier than usual. I packed up a few other items-Lewis already had quite a bit in the trunk. We were off for the hospital by 8:30.
While Sloan is an amazing hospital and the staff is knowledgeable and very attentive, there is always some confusion and today began with a check-in time 3 hours before my visit with Dr Comenzo. When I called Admitting on Sunday and got that info, I didn't dare say anything about my appointment for fear that info would some how jeopardize my check-in.
As we pulled up to the hospital, I called Dr C's office, but it was too early to speak to Jason or one of the nurses. The receptionist promised Patty would call back when she got in.
At 10:30 when the volunteer was escorting Lewis and me and another couple up to the floor, I finally got through to Patty. She told me to leave this group and come to the 4th floor with Lewis so I could see Dr. C. She promised they would sort out the Admitting situation. The volunteer looked at us as if we were crazy!
Lewis and I got to the room and settled in by 12. That meant he went back to the car for the rest of my stuff. It's quite nice here but it's not the 4 Seasons, so the garage attendant suggested a wheel chair for all my belongings.
Lewis hung up a big collage for me (from when the kids were small) and we made the room homey. I have my laptop and there's a desktop so we both could fiddle around.
I had many hospital activities, forms to fill out and various people to meet. When Dr. Moskowitz came by on rounds, he said, "So you're the famous patient who infected the donor room with that RSV virus"-he said he heard the story, but was kidding about the contagion. Lewis had to explain the joke part. Dr. M cleared me for chemo after 5.
Right around then with the help of Lewis and Michael, Julie and I had our first video iChat. She took me on a tour of Michael's house which looks beautiful-it's filled with sun and art I look forward to seeing up close. I gave her a tour of my room, which is a very lovely dorm single with a view of the 59th Street Bridge. I even tried to show her the traffic since it was rush hour.
As expected I was ready for some sleep by 8-especially since Kathy, my nurse from Plainview whose son is a sophomore at JFK in Plainview, told me they'd be waking me up every 4 hours for vitals and meds.
According to Dr. M, I should feel fine until next week. Tomorrow I have a day off before Weds' transplant.
January 30, 2007 at 04:06 PM EST
I have had a number of conversations about tomorrow's events. Since I collected 26,000,000 stem cells I'll only need one IV bag of stem cells-the sct or stem cell recovery as the nurse practitioner calls it will take 15 minutes. Tomorrow will be known as day zero. I should anticipate fatigue by Day 5. That should last for 5 days and then I'll be on the mend.
February 01, 2007 at 09:29 AM EST
The transplant was anticlimactic as the doctor said it would be. Just one syringe of stem cells since the syringe was jam-packed with the little buggers. With the aid of some drugs, I nodded off for most of the day and night, I feel great this morning.
I'll be able to go out when I get home-just no public places-just a little visiting-no planes, trains or buses.
All your love and encouragement make my day.
February 02, 2007 at 06:17 AM EST
There are certain things we Hanley girls learned from our mother. You must always present your best self. You must wear lovely lounge pj's. You should always apply your make up if anyone else is around. In fact, you should always apply your makeup just for yourself. And finally, be sure to select the appropriate earrings and necklace for your outfit.
With the help of my sisters who amassed a lovely collection of pj, slippers, and Sharon who found the elegant nightgown and fun slippers, and Julie who bought me this lovely piece of turquoise that's around my neck, I'm able to meet Mommy's standards. And thanks to Thais who was lured into Laila Rowe's 75% off sale, I ended up with some lovely blue and pink closinette earrings that match two outfits.
I didn't have think twice about my outfit for the transplant!

February 03, 2007 at 06:15 AM EST
You'll never know what you'll be doing in the hospital during the wee hours of the morning. I have become addicted to hearts. I even leave the sound of the computer-generated companions’ groans on now for weird company in the dark.
However, the most unusual activity for today has been a joint activity with my nurse Nancy. Ellyn stopped by for a visit today and left a Diva teddy that promised to sing a tune from Flashdance. Well, at first we couldn't find a switch. Then we found a battery container and an on/off switch in the on position. Nancy told me, "No problem, we have all kinds of batteries." She tried her pen top, a scissors, but it looks like we need an eyeglass Phillips to do the job.
I visited the website and sent the company a message. I was able to visit my bear online and she sang to me. Ah, modern technology.
When you have no papers to mark, it's amazing how much time you have.

February 04, 2007 at 07:30 AM EST
Important news to report-I have reached my weight-watcher goal. If there is anyone who'll be stopping in at a meeting (of course my membership has lapsed) let them know this stem cell recovery has secondary gains.
The nurses gave me a special red rubber fall precaution bracelet because somehow they heard I was a klutz.
Thanks to all the special nuts in my life who filled my room with cards, and pictures and toys and piñatas, and Valentine's decorations. All I'm missing is that Jolly Green Giant Patty and I talked the guy out of in the supermarket back in Buffalo for our dorm room. I feel a bit like a freshman, lots of free time and a vague plan. Ah, breakfast is coming-chicken consommé 2x
February 05, 2007 at 02:33 PM EST
Today is day 5 from the transplant which means I'm moving toward engraftment (that should take affect around the 9th day) Only my white count is down-so no need for transfusions as of yet.
I can read-I thought that wasn't going to be possible, but my concentration is fine-cover-to-cover New Yorker today.
Lewis snuck in last night after his rehearsal for some cuddling. Who says the hospital can't be fun?
February 07, 2007 at 08:33 AM EST My room continues to fill with all sorts of vivid and loving images. The sun is so bright; my doc has requested I wear sunscreen. Send me some pics to post if you have any you'd like to share.. I've been here 10 days now and there are no more than 10 to go.
Miss you all
February 07, 2007 at 12:52 PM EST
It's time for a longer story. Two days ago Ellyn from Buffalo days and Puerto Rico vacations arrived with a funky teddy. We chatted. She told me about the grand piano on the 15th floor that a Julliard volunteer tinkles away on. Time passed and she made her way back to New Jersey.
I cuddled up with the Diva and read a little card on her wrist that said she sang.
I unzipped her bottom and noticed that she was already turned on-the switch, no fresh comments, please, but not singing.
My doctor came by-a cute young dads who is familiar with these little screws that hold batteries in so the kiddies can't tinker with them. He promised to bring his tool tomorrow. The nurses said they had extra batteries and this was going to work.
I went to the website for the Diva-get with it-everyone, everything has a website. I found out that she sings "What a Feeling" from Flash Dance. I needed to hear that song. They played it for me on the website. It's a clip and I can even add it to my iTunes. I sent an email after I read the FAQs. This is a lot of work. You think I need a job.
Morning comes and Dr Adam brings his tiny screwdriver. He releases the batteries, the nurse wipes his brow and slides in a new set of batteries. Alas, No Feeling.
Now, Lewis is no slouch when it comes to fixing things. He's an inspired craftsman with a little Rube Goldberg in his blood. He's going to check the doc's work. He analyzed the situation. Piled up now are three sets of batteries that he's pretty sure work. He's betting on the musical device itself. So the diva took a seat on the windowsill...
until the next day when two of my sisters came for a visit. When I mentioned Diva's problem, Jeanne immediately said, "Margie, take her home to Paul. He'll tinker with it."
We ate lunch, played cards, I got a little trim and then when the ladies were getting ready to go, Margie picked up Diva and squeezed her hand and she sang like a champ. Lips wagging and all. Margie just pressed the hand that said SQUEEZE ON/OFF
It takes a village! "What a Feeling...take your passion, make it happen-I am music now-You can dance right through your life. Words of wisdom!

February 10, 2007 at 06:52 AM EST
I've been a little distracted with some pain these last few days. I haven't been able to swallow-like a strep throat kind of feeling. Since I haven't been eating much, I've gotten more IV and I hate to say it, but water weight is upon me and I gained three pounds-no more weight watcher goal for a while.
I did get a little morphine pump to ease the throat pain. Morphine and mashed potatoes with gravy is quite incredible. When I called down to room service to order them, I asked if I could get a little cheddar cheese w/ them. Tho and behold, the cheese was whipped into the potatoes-lots of gravy in a bowl on the side. Click the morphine pump, wait twenty minutes and boy, oh boy, did I enjoy those potatoes.
Michele visited me today when the "music therapist" came by-a hottie named Alexjandro who played the guitar. He liked the Bob Dylan too so he played-Go Away from my Window and we all sang together. He played Summertime, a samba and a bossa nova. He takes requests in advance so he can practice and/or learn the tune by his next visit. I can't wait.
I'm going to sign off now because I'm going to do some water coloring this morning. This place is too much fun. When I found out I had cancer, I said I wanted to go to camp and guess what, that's just where I am.
February 12, 2007 at 12:38 AM EST
Don't miss the crew cut pics. Margie trimmed and shaped my hair twice, but lately my scalp has been getting itchy and when I sleep I get some wicked dents in my hair that hurt a little. This morning armed with a pick and an arts and crafts scissor, I gave myself a crew cut. Then I went to Photo Booth on my computer-a place where I can take strips of photos like we did in Woolworth's in the 50's & 60's. Let me know what you think? Military, Sci fi definitely in need of cover? February 13, 2007 at 02:47 PM EST
I guess I got a little busy and then I really missed hearing from you so I'm back. When the doctor said I could go home on Tues, I told him I'd rather leave Weds. There were too many things to do, ports to remove, questions to be answered and I was a bit nervous. After all at Spa Sloan, I had 24 hours of sunshine attention, I wasn't sure I even wanted to see my apartment again. After all, at Sloan, I had a view of the 59th Street Bridge. That's got to count for something.
Throughout the day and night, the nurses kept visiting, reviewing the rules-if it's on the floor, don't pick it up, get a new one, it's dirty. I guess now that I have a baby's immune system, the nurses were trying to impress upon me that I must be careful. I dropped a chapped stick and Nurse Nancy gave me a new one-dirty, she said.
I figured within a day in my own care, I would succumb to the ecoli virus that I got from picking up that dirty chapstick.
Here are a few rules for me to live by: No housework, (now that's good) no lifting, cooking with rubber gloves, new towels every day, eating six times a day until my stomach is back on track-hey, this is a fulltime job. Good thing all of them said, "Take lots of naps!"
I was ready to go home at 4 AM on Feb 14 and I mean ready. I was dressed, my make up in place and every last item was packed away. My sisters, Jeanne and Margie were coming at around 11:30 so I had some time to kill. Lewis has always encouraged me to call him at any time, but since I'm often up when only people who work the night shift are, I never really wanted to get in the habit of calling him at my odd hours. Besides, he is a good sleeper who actually often sleeps 8 hours. I waited til six to stir him. I listened to iTunes, read several hundred pages of I am Charlotte Simmons-all to avoid thinking about going home. It was Valentine’s Day and when Jeanne and Margie emerged from a very snowy day to collect me, the volunteer gave us each a small box of Godiva chocolates (6 pieces-it took me a month to eat.)
February 18, 2007 at 08:18 AM EST
I've been feeling a little weary and my tummy isn't much interested in food or drink. It takes work to make sure I'm eating and drinking. I was doing fine for the first two days with five or six little meals and then yesterday the thought of food or drink made me queasy.
Noodles, Jell-O, juice to start this morning and then I hope I have my strength back.
I must say I miss the air mattress from the hospital-no ache, no pain-nothing's moving in my house so my body aches. Time to call for a massage.
February 20, 2007 at 09:51 AM EST
I have to work harder at hydration-this is Ms. Weight-Watcher--beaker twice a day at school, now it's difficult for me to have more than a glass or two of water. I have a great deal of muscle ache that I was attributing to Friday's walk but after my visit w/ my nurse and a wonderful massage at this point it's about the water-I am sick of water, juice, etc so Josh is on his way to get me some Vitamin Water so I can replace my electrolytes.
Emily (the stem cell nurse) was pleased with my progress and told me every concern/experience I had thus far was normal-from the burst of energy, the long walk, the lack of thirst, and the muscle pain. She assured me that it would all pass soon.
I've been watching a fabulous Italian mini series that starts in the 60's-student rebellion, love, insanity-after about 4 hours, I'm in the 80's. In another time I'd be interested in a glass of red wine, but now, no thank you.
As much as I wanted to go outside when I got home, I'm not interested in another neighborhood walk until the aches go away.
February 27, 2007 at 09:38 AM EST
Never a dull moment-I have a cavity in a root canal that is part of a three tooth bridge-you guessed-cut out the bridge, extract the tooth-just a little taste of Job
Oh and did I mention a rash all over my face-only mildly painful as long as I don't look in the mirror.
Yikes, I think I still have my sense of humor.
February 28, 2007 at 01:50 PM EST
Still waiting to hear about the antibiotics from the stem cell nurses-I or 2 taken 4-6 times a day-hummm
The antibiotics have definitely eased the tooth pain and my face is a little itchy-as long as I don't look in the mirror, it's not too bad.
I got a body scan out of yesterday's six-hour stay in Urgent Care and the dermatologist said everything was fine.
I'm going to watch L'Enfant now I've spend too much time organizing today. Rest is in order.

March 29, 2007 at 01:19 PM EDT
Well, it's just a day and a month since my last comment. March has flown by. I'm stronger and healthier. I'd say just about normal as long as I don't work too hard or walk too far.
The good news is the first transplant was successful-the cancer couldn’t be detected in my recent blood work. I’m in complete remission. The bad news is May 7th is the scheduled date for transplant #2. I was hoping to play away the summer and then transplant, but alas, Dr C did say 60-90 days. Somewhere in my dreams, I thought I heard him say six months.
He predicts the 2nd will be identical to the first in terms of experience and recovery and has declared that I cannot go back to work before January 08.
April will be a wonderful month. While I still must avoid mass transit, theaters and movies, the weather will permit more time outside and some morning museum visits before the hordes descend.
Hugs and love to all
Thanks so much for all your support during this time
May 09, 2007 at 01:19 PM EDT
I haven't much to say these last five weeks. Once I got the second transplant date, I avoided most everything. It's actually a relief to be in the hospital because everything will be finished and I can go back to my normal life.
After the second transplant
May 15, 2007 at 04:17 PM EDT
I don't remember returning to the hospital disappointed to deliver a baby boy. That's the only reason to go back to the hospital. A second transplant-well…
Thanks for all your well wishes and prayers. I miss being out among the people.

2008-06-15T02:48:00.000-07:00

THE HARVEST

Doesn’t sound like something that will take place in NY. I visited the blood bank nurse to have my veins evaluated. She told me I needed a port, she didn’t think my veins would make it. I made an appt to check into the hospital to have a Leukafresa port put in-everything is named after someone.
The idea was that a tube was going to be inserted into my heart (I think) three tubes would be sticking out of my chest. The nurse could use one to take blood and the other to give me whatever I needed. The third was for just in case. I had to give myself shots for seven days before the harvest to stimulate stem cell growth. While I was in the hospital, the nurse taught me how to give myself a shot. We didn’t practice on me; we practiced on a pillow.
Later in the week, I wasn’t feeling very well and I called my nurse so told me to call into Urgent Care-that’s Sloan’s emergency room and get my nose swabbed. After forever, I was told I had RSV virus and should stay the night. They told me I could still harvest on Monday but would have to be checked before I could come into the hospital.
The night before the harvest, I called my Michele, my very own life coach/guru/dreamer and said that I wasn’t much good at visualizing. I loved the concept and could frame it, I just6 couldn’t see it. So she stayed with me on the phone and I didn’t give up. Little by little, I had a glimpse of a blue vista filled with white siggly things that I decided were a variation on sperm—something I had got the image for many times before. I didn’t make much of the image, didn’t judge it or try to change it. It faded and we talked about the chattering mind. The blue vista came back into focus. It was pretty amazing. I am so text driven that I don’t see pictures in my head. I have a running text bar like CNN. In fact I can’t stand to watch any of those news programs with that scroll because I can’t follow the picture, I must read the text.
Michele and I stayed on the phone until sleep lulled me in. I said good night and went to the land of the blue vista with the white squiggly things.
The following morning I met Jeanne and Margie at the blood bank. The nurse tested me and said that I still had the virus but that I could harvest. I got into this bed in a room with four other set-ups. The guy across from me was actually going to use his veins, no port for him, a little hairless boy with opaque skin crawled into the bed to my right. His mother was by his side.
My sisters and I decided we would play gin for the four hours and we set the game up. Jeanne and I remembered how to play from when were kids and Margie, well she’s a good sport. She humored us and just played. The nurse became her tutor. She hooked my port up to the machine and explained that all of my blood would be coming out of my body and be filtered by this machine. The stem cells would be collected by the machine and the rest of the blood would be sent back into my body. A little vampire moment? The funny thing was that, I felt nothing, save for a tiny chill later on.
The harvest was a minimum of two days. By the end of the day, a controversy ensued. The doctor shouldn’t have allowed me to be with the genral population because of the virus. She tried to blame the nurse who had been taking care of me, but how could we allow that, not only had she harvested the stem cells, she kept the gin game going. She told us that when I came back tomorrow, I’d have to go into insolation. I worried about the little luminicent boy and the man who simply opened up his veins for the harvest. Both their immune systems were challenged. I prayed I didn’t add to their illness.

Later that night I had a message from my nurse, “Corinne, this is a first. You don’t have to come in tomorrow. You harvested 26,000,000 stem cells—enough for six transplants.” This was really exciting. I thought about the blue vista with the whiter squiggly things and wondered.

When I saw Dr. Comenzo I told him about the creative visualization and he said that he believes that the mind is a valuable tool in recovery and survivial. I told him about the blue vista and he smiled. “We inject the stem cells with blue dye so we can see them under the microscope.” All righty, then.

2008-06-15T02:46:00.000-07:00

THE NOVEL AGENTS

Doesn’t that sound so much better than chemotherapy? These novel agents, unique agents are second-generation treatments that are not as difficult on the body or the soul. The first round was by mouth. I took a new drug called Revlimid. It is a revised Thalidimid. Thal has been successful for many people, but the side effects take a toll on the quality of life. It’s not just about living any more, quality of life is on the table too. Scientists were able to isolate the molecule(s) that caused the side effects-the worst being peripheral neuropathy. This deadening in the hands and the feet doesn’t go away when you stop taking the medication. So Revlimid is the new wonder drug. Again, I bless my insurance and wish that all Americans had it. Rev costs $30,000 a month, but with my plan. I paid only my copay $15. After two months on it, my numbers started to go up so my doc changed my med to Velcade. Since he was getting me ready for transplant, he wanted to get those numbers down ASAP. I was still left with a full bottle of Rev. I keep it in the pill cabinet. When Dr. Comenzo asked if I had some left because we might use it in conjunction with another drug, I joked and told him I sold it on eBay. I also have saline and hepbrin syringes, neupurgen shots to stimulate stem cell growth and no place to donate them. Three months of Velcade got the numbers to the place they needed to be for tranplant Six months of treatment, of novel agents attacking those cancerous IGG weeding them out until I was almost good as new. For me, it was on to dexemethsone that evil steroid that makes you ravenous and sends you into a tizzy. It is however a pretty effective cancer killer that offers a short remission but can be fine for patients getting ready for transplant. I was to complete three pulses in the month of June. That’s four days on-four days off times three. The first day I took the dex, my energy was boundless. Manhattan is a great place to live if you don’t sleep at night. I went out to buy birthday cards after midnight, paid all my bills, reorganized my closet and so on. I didn’t sleep much the four days I took the dex. As far as I was concerned this wasn’t a mood swing, it was a blessing. On the sixth day when I was off the dex, my adrenal system crashed. I was so tired, but I couldn’t sleep for long periods. I couldn’t get out of bed. I called in sick. I was so depressed. All the investigating I had been doing to understand my cancer and my treatment seemed so pointless since everything was so incredibly hopeless. I didn’t even want to try to feel better. I was convinced it would be impossible. I called my psychiatrist and shared my concerns. He gave me a number of things to help me sleep. He demanded a full eight hours. I haven’s slept four eight hours since menopause started. Armed with sleeping pills and an antidepressant, I tried the second week of dex. I couldn’t leave my apartment. I couldn’t sleep, but I was too tired to get out of bed. Denise and the department picked up the slack, marking my projects and dealing with yearend minutiae. Denise told me to get my ass into work. She said I could plant it behind my desk in the English office and close the door. She was right; it would help to be in the office. I didn’t want to see the faces of the friends and colleagues who already saw me dead. Sympathy is pretty tricky for me. It didn’t get much better so I called Dr. Comenzo and asked if I could try something else. I was worried he wouldn’t like me because I wasn’t brave, but he didn’t seem to mind. He was agreeable. He put me on a new drug, which had just been approved for Myeloma called Revlimid. I had to take a little dex with it. He modified the standard dosage to consider my reaction to dex. He agreed that I should go back to work in a day or two when the dex would be at bay. Denise was right. Sitting at my desk, students at home studying for the regents, and those who had been worried I’d die soon were too afraid to stop by and say hello. All my lovelies and Gabe indulged me-sort of an extended chemo party (more later). From the Revlimid, I regained my sanity, but developed a full body, itchy, itchy rash. I needed a shot of procrit because my red blood count had dropped. Yikes! Dr Comenzo reduced the dose of revlimid and I got my shot. When school ended, my daughter, Julie visited me. We were taking a road trip up to a friend’s bed and breakfast. Julie had volunteered to help me pack for my trip to Italy with Lewis. Dr. Comenzo assured me that there was no reason to sacrifice any fun for MM. My kind of guy. I was excited about all these prospects, but I was a nervous wreck. With a compromised immune system, I was supposed to be germ conscious. I have always held on to the banisters, the poles in the subway. I probably even touch my face while I’m on the subway with the hand that holds the pole. I must add that I’m a daydreaming and as a result (maybe) I am clumsy. I leave the walking to my feet and sometimes it’s not pretty. This all leads to a little fieldtrip that Lewis and I took downtown. He is a wonderful planner. He bought me a daytrip book and asked where I’d like to go. I said we should start on the Staten Island ferry and then visit some sites in the Wall Street area. We took the subway downtown. Lewis would have preferred to drive, he deferred to me-this was one of the only times we took the subway in the two years we were together. Walking up the steps at Whitehall Street, I decided to avoid germs and not hold the banister. A big mistake. I fell and used my wrist to block my fall. It couldn’t possibly be broken, I thought. It hurt like hell, but all I needed was a little ice. We came out of the subway and I said all I needed was an I Love NY tee shirt to make a sling and a little ice and I was ready for the ferry. I can be the cockeyed optimist. We spent the next six hours on our little field trip. My wrist was throbbing in a numb sort of way. When I finally sat down on the couch in my apartment at 6 PM, I announced that I thought we should go to the emergency room. I left my car keys with Josh so he could pick up his sister and Lewis and I took off for St Luke’s. This was the evening of the break at St. Luke’s and the wait for an xray was more than two hours. We crowded in to sit with people whose wrists were crooked, whose legs were mangled, fingers maimed. We all got ice and waited. We traded stories. One guy’s middle finger was broken. He had somehow stapled his finger with an electric carpet stapler. Another young man was teaching Irish step dancing and in his demonstration he went down on his wrist so hard he couldn’t straighten his hand. Two lovely lasses had escorted him to the ER. It was obvious his charismatic charm drew them to him. This was almost fun. When the doctor was ready to see me, he had to wrestle my grandmother’s engagement ring off my finger because of the swelling. I was thankful that he didn’t have to cut it off, but it hurt so much and I knew it was only a prequel. he told me he had to pop my bones back in place. He showed me my x-ray. He turned to the resident and told her to make the adjustment. I’m all in favor of education, but this was my wrist. The diminutive resident smile nervously at me and grasped my wrist. I let out a bone-chilling scream. When she stopped, the doc rexrayed it and said it wasn’t quite right, he’d have to do it again. I requested drugs. When the nurse came in with a giant needle and said she had to inject it into my muscle, I decided to just scream again. And I did. The doctor was satisfied. Since it was close to 3AM and the crowd had thinned out he told me about my fracture. It was called a Coleus fracture named after an Irish surgeon who identified the break without the benefit of an x-ray machine. Farm animals. Who knew farm animals had wrists.The doctors told me that my Irish step dancing friend had a more serious version of the fracture and he volunteered to let us compare our x-rays. Now I was officially having fun. My daughter’s plane was delayed and she and her brother arrived at my apartment at the same time I returned from the hospital. My kids took over where Lewis left off. Julie and I were still scheduled to leave for Massachusetts in the morning. Here I descended (or arose) into new age heaven. We all went to see a healer who told me that my heart chakra was closed and this was preventing me from healing my cancer. Next two young healers, friends of the B&B owners stopped by and changed my vibration. I enjoyed the ritual, but found myself annoyed by all this talk of my control over cancer. The idea that I had allowed myself to get cancer was appalling. It made me feel so guilty. What a failure. It was terrifying to think that if I were really open and pure, I could heal myself.

2008-06-15T02:45:00.000-07:00

THE PROTOCOL

The first round of treatment consisted of deximethizone a steroid that can fix anything quickly but its effect isn’t lasting-this plan was to knock the numbers down so I’d be ready for transplant the steroids shut down the adreline system just another of those regulating systems that help us keep put body on track. It’s like speed-now I didn’t have any super human baseball strength, but the first night I did take a walk to cvs to catch up on my birthday cards and drug store shopping after 1am. Those first four days I stayed up even through a sleeping pill. I did a lot of reorganizing. I trudged through work looking a bit maniacal but I had informed the staff before the treatment of what was to come. The 2 4 days I stopped the dex as played after three days I could not go to sleep and I could not get out of bed, by the 2nd week, I was weeping. I was so depressed I could lift my head
My department did everything they could to keep things business as usual they marked all my final projects, tidied the office and sent me their love. They are a blessing In the past five years the staff has turned over and I have been blessed with imaginative, compassionate, anything for a laugh, get the job done staff-- each provided something always for me but now more than ever they tucked their fear away and came to my aid
When my treatment switched to IV once a week we had a chemo cake in honor of the treatment

2008-06-15T02:44:00.000-07:00

ALTERNATIVE HEALING: MAGICAL ELIXIRS

THAT AREN’T CHEMO

One of my new age friends recommended noni juice as the panacea. I decided I would try it the regimen required a quart a day for ten day, then ½ and so on til you reached 2oz a day. It’s about 30 from the dealer and it really tastes awful maybe the way whiskey tastes to a baby. I spent my month slugging it all day long, slinging back glasses of water to rescue my mouth from the taste. I drank from the bottle (while I was on the quart treatment) hoping maybe I’d get stopped for drinking. There was something about the image of me being pursued thru central park in the late afternoon as I slammed a tall green bottle. I wanted the officer to taste it or at least smell it. It never happened but it helped me get the noni juice down. When I went back for a blood panel my numbers soared apparently the magic of noni is its antioxidant value and I found out that my little mm loves antioxidants so they proliferated. It was time for treatment. There is no direction evidence as to what moved the numbers, but for me the timing seems clear.

Now, I have always been peripherally involved with supplements and health food, which means in plain English, I buy a multitude of supplements and take them for a while and then forget about it. I am aware of most of the latest trends, but am a little skeptical and a lot lazy.
Once the people in my life knew I had cancer, a friend of a friend of a friend called me to suggest I try a juice, which will go nameless. This juice was about $40.00 a bottle and I had to drink a bottle a day for ten days and so on. Now everything in my life had a protocol. I made phone calls, talked to people who had been healed and decided that what the heck, I’d give it a try. Of course, I didn’t call my doctor. At lunch hour the distributor arrived in my school parking lot with two cases of this stuff. It comes in green bottles that look quite like wine bottle and the stuff is reddish purple.
I brought one bottle up to the English office. I opened it and drank from the bottle-after all I had to finish it. It was awful, but I endured. By the end of the school day, I still had a half of a bottle left so I took it down to the car with me. I have to admit that I took a few slugs on my way back to Manhattan almost wishing a policeman might catch me in the act of poisoning myself. For ten days, I drank a bottle a day, then a half for a few days, a quarter and then I went back to see my doctor. My numbers shot up to 6500 (from 4500) and I was now going to start treatment. I can’t say the juice caused the increase, but my doctor told me that my cancerous cells crave antioxidants. It’s their candy. I passed the information about this wonder juice onto my sisters and two of the three started to drink it. One has made it part of her daily regime, swearing it helps her with her fibromyalgia.

2008-06-15T02:43:00.000-07:00

MEETING DR. COMENZO

I am the oldest of four girls, a teacher, and department chair used to a modicum of control. I’m pretty good dodging conflict and use language and a little irony to protect my very body and soul. I went on board with Dr Comenzo in April 06. He said we’d watch, it-it was too early to treat-a numbers game. I brought Lewis, all my sisters and my daughter Julie for this visit. Everyone asked a few questions; Julie took notes. I was a little fixated on the two-five life expectancy. I had read a bit on the Internet. Dr Comenzo answered my questions but he likes to think about something else after the medical talk is done and we landed on books. He always asks me what novel I was teaching and he give me his insight to the piece or the time period or in the case of Raisin in the Sun how racism still prevails today When I told him, I was teaching the Little Prince, he asked me if I remembered the article a year or two ago that details the finding of his body off the coast of Morocco. His eyes twinkled when I said no. While I finished with his nurse, Patty, reviewing this month’s protocol, he appeared with two articles he printed from the Internet for me to share with my classes.

2008-06-15T02:42:00.000-07:00

THE EXPERTS

Dr Jaggonath provided the intellect, grace and a mischievous sense of humor. He had natural affinity for people and a sparkling compassionate nature. His treatment plans were individual. He said while longevity is getting better, the average life span is still 3-5 years. He told to just listen. He insisted I stop taking notes and he took all the notes for me actually writing upside down while he talked so I could inspect his drawings and graphs. Quite the one-man show. He said the treatment has come a long way since the 60’s. Back then in a clinical trial, ½ the patients were given a heavy-duty chemo and the other half Coca Cola (I couldn’t tell if he was kidding.). He said those given the soda lived a bit longer. The chemotherapy was more deadly than the disease. This was all pretty serious. I felt fine, but now I needed chemo so I could live 3-5 years. What is this? I was so confused and frankly so pissed off.
Treatment for me, he said would be a single or a tandem stem cell transplant after the chemo knocked out the cancer. How do you actually transplant cells, I wondered. He said that there were drugs just getting their approval like Revlimed, a cousin of Thalidomide. The researchers isolated the molecules that caused the side effects in Thalidomide like peripheral neuropathy, insatiable hunger, and drowsiness and got rid of them. Then they made this new drug that just killed the mm cell. While this all scared me out of my mind, I felt like here there were more options.
Lewis came with me. He calmly read the newspaper while we waited to see Dr Jaggonath. We were here to learn about options not try to determine my expiration date.. He asked questions when we went in for the consultation and he attempted to translate some of my terror-addled long-winded questions into specific answerable questions. Afterwards he didn’t seem stricken by the consultation. He calmly asked me where I’d like to go or what I’d like to do. Short of walking a few blocks west and seeing if I could run across the Westside Highway without getting hit, and if I survived, jump in the Hudson River just to test my meddle, I couldn’t think of a thing. Then I remembered a new Trader Joe’s opened just a few blocks away-the first in Manhattan and there were a few things there like Panda Black licorice that would make me happy.
While I would have loved to stay with Dr Jagganoth, neither he nor his hospital were covered by my insurance and the costs would be daunting- He told me that he would accept my insurance, write letters advocating for me. I told him that I didn’t think I had the strength to add a major insurance battle to this fight against invisible kooties. I told him my plan covered treatment at Memorial Sloane Kettering. He referred to a colleague of his at who practiced at Sloan, Doctor Comenzo.

2008-06-15T02:41:00.000-07:00

Yogatha, a healing angel in Amsterdam

Living large in Puerto Rico-an excellent habit

My Michele

Lovers for life

Pals for life. Partners in crime who become 17 all over again.

Our mom would be so proud to see that she raised four independent, supportive, beautiful women who watch over each other.

Check out the matching outfits-Happy women stand up to cancer in their pink socks!

FRIENDSHIP

My friends have the capacity to be truly playful children and when I asked one such playground pal, Leslie, to keep me company for the bone scan, she agreed. She drove me there and before we got out of the car, she slipped one bud from her ipod into her ear and one into mine. Salsa music was blasting. When we got out of the car, we danced through the parking lot, into the lobby and up in the elevator. It was a wonderful break from in the terror I was feeling. Happy and free in the moment--this was one of those moments I got to live out loud. The bone scan was clear. My bones looked fine; they had not betrayed me.

My friend Claudia came for the follow up visit with Dr. Shevde who planned to explain the disease and suggest treatment. It had been only ten days after that initial call from my internist Dr. Smollow saying I had this elevated protein count. I couldn’t quite believe that any of this was real, but here we were both armed with our pads ready to write down everything Dr. Shevde said in order to make sense of this or at least have an idea about treatment. Claudia is a scientist. Her keen mind and her composure made it seem as if we were gathering information for some intellectual pursuit. It didn’t feel personal. It didn’t feel like it was about me. After Dr. Shevde reviewed the disease and the natural progression if not checked, she indicated that her plan of treatment included thal/dex (thalidomide--as in the sleep/tranquilizer given to women in the 50’s—you know the one that caused all those birth defects-this was going to help me-dear God.) As she read off the side effects and I jotted them down like any good schoolgirl, I could feel the tears welling up in my eyes. Weight gain, drowsiness, constipation DVT-deep vein thrombosis (which could be fatal) and neuropathy-dead spots many people experience in their hands and feet. Dead spots that never go away. As I finished writing the word neuropathy, Dr. Shevde went on to discuss the steroid dexamethosome which often causes mood swings, insomnia, weight gain. I already have had enough of my own mood swings; I certainly didn’t need them induced. The cure seemed far worse than these kooties that weren’t causing any trouble at the moment.
When Dr. Shevde looked in my eyes, she knew I wasn’t ready to start treatment. She suggested that I see someone active in Multiple Myeloma research-someone on the cutting edge. I actually knew whom I wanted to see. My friend Marlene and her husband Joseph had done all the research for their brother-in-law who had mm for five years. When I told Marlene that I had been diagnosed with myeloma, she handed over all the information. From all her research it was obvious that the man to see in New York was Dr Jagganoth. I asked Dr. Shevde if she could get an appointment for me. Her nurse called and then buzzed Dr Shevde to say it was a three-month wait. Dr. Shevde was kind enough to call for me and got an appointment for the following Tuesday with Dr Jaganoth one of top Multiple Myeloma specialists at St. Vincent’s..

2008-06-14T08:09:00.000-07:00

THE NEWS
When I returned home from school on Monday night, I got a call from Dr Smollow about my physical. In the 10 years he has treated me, he has never called to report on my physical. Often I don’t even call myself because no news is good news.
He told me to sit down and write down this following information. He told me that I needed to see a hematologist. He gave me her number and said she’d explain everything. I didn’t have an idea of what he was talking about and was frankly too afraid to ask.
I turned to my son who had been listening to my conversation and asked him to buy me a bottle of Cote du Rhone. He looked concerned, but asked no questions. When he returned with the purchase, he poured us each a glass of wine and we watched back-to-back episodes of Law and Order. He didn’t say a word. And neither did I.
In my manic proactive approach to something that scares me, I made an appointment for that very day. Dr. Shevde’s office was five minutes from school and she had a cancellation at 3:30. When I arrived, Dr. Shevde explained that my blood protein count was quite elevated. These results had come from the routine test that was part of the physical. She wanted to rerun the blood tests. Once she drew the blood, she made several slides and inspected them under a microscope. I had never seen a doctor do anything with blood before. Usually a nurse fills a few tubes with blood and It shipped off to some far away lab and processed. That’s the end of it.. This felt very serious. She told me that it was possible that I had multiple myeloma. I had no idea what she was talking about. Let me just add that I am the antihypocondriac. I don’t watch medical TV and while I am sympathetic and concerned for those I know who have experienced health traumas, I don’t remember details about diseases or even symptoms.
I asked Dr. Shevde what the next step was and she said she would like to do a bone marrow biopsy on Friday after she received the new blood results. I encouraged Dr Shevde to do the bone marrow biopsy immediately instead of waiting until Friday. I told her that my psychiatrist had done the same blood tests in August and that he had noted a slight elevation in the proteins. From the examination table, I called Dr. Winchell and told him I was in a hemologist’s office because my protein levels had risen further. I asked him if he could speak to Dr. Shevde to confirm the results from the tests he ordered. After Dr. Shevde finished her conversation with Dr. Winchell, she said she’d be glad to oblige and we squeezed into her biopsy room. Her nurse turned on the fan because she said three women prone to hot flashes digging around in the bone marrow definitely required a breeze.
The biopsy felt like she was suctioning something out of my body. There was a strange kind of pressure, but it was over pretty quickly. Again Dr. Shevde looked at the blood under her microscope and said there was something definitely going on here. She is a very intelligent, kind and nurturing woman whose son had gone to high school with my daughter. We were both Great Neck mothers. She played bridge often with the librarians from my school. My darling Marlene who explored the hero’s journey with me and had all the research about MM because of her brother-in-law. I felt optimistic. I pushed all my fears back down inside to that place where they can be contained at least for a little while. and smiled. I’m really good at temporarily keeping up a cheerful front.
The labs would be back on Wednesday; Dr. Shevde promised to call.

I had planned for more than a month to go to see Emeril Live with my sister Donna on the day the results would be in. Josh’s roommate Yvette worked for the show and she snagged two tickets back around Christmas and I stuffed them in Donna’s stocking. It seemed like a good idea to spend the day with my sister distracting myself from my fears. Emeril commanded all of my attention with his zaniness. Well, almost all. The food smelled delicious; the recipes looked easy enough to handle at home.
By the time Dr. Shevde called, Donna and I were strolling through the Food Network’s gourmet mall with our goody bags in hand, fantasizing about food.
When my cell phone rang, I knew the news was bad. I heard Dr. Shevde’s voice. She said, “Corinne, I’m sorry to tell you that you have multiple myeloma.” I cried at the bistro table in the patisserie while my sister tried to protect me with a latte. She continued, “There are many treatments. I’d like you to have a bone scan on Thursday before you come in on Friday.” We agreed I’d get a bone scan and be back in her office by Friday.
Everything I thought I knew seemed suspect. I prided myself on being observant, but somehow this treachery had slipped in past the gate. I hadn’t felt better in years. When I turned 50 my thyroid went haywire and threw my entire system off. Now that had been under control for at least three years and menopause-- let’s just say the night sweats, hot flashes, sleepless nights while not yet a thing of the past were now something I just called weather and learned to dress accordingly. I hadn’t even had a cold in two years. I had no aches or pains. But now I had koooties in my blood. Kooties that I couldn’t feel, but they’re there under the microscope.

Bless or curse the internet, I looked up my disease-life expectancy 2-3 years. The kooties in the blood would overpower my immune system. Since these cancerous kooties grow like weeds, the two other healthy immunoglobbins that makeup my immune system would be choked out. And when these kooties take charge, they nest in the bone marrow-at the heart of the bones. They cluster together. This kootie hanging causes tumors that can shatter the bones. Hey, that will wake you up. At present, there is no cure or as some of the websites note: multiple myeloma is incurable. I visited a number of websites, each offered variations on the theme, none good.

2008-06-14T08:07:00.000-07:00

STAYING ALIVE AT FIFTY-FIVE
When cancer comes calling there’s no choice in the matter. There are no excuses to be made. You can’t get out of it.

Before The Diagnosis
It was the weekend of March 16, 2006-my 54th birthday. It was a weekend of tradition- our eighth annual getaway. Jessica and Joanne, my roommates from college and Lorinda, a friend for the same 35 years fly to Puerto Rico, go only as far as Isa La Verde to the Intercontintal Hotel where Jessica has arranged for everything to be perfect. This healing ritual includes walks on the beach, fine dining, spa treatments, dips in the ocean, maybe a little gambling. Sort of what life would be like if we were kids again, planning our day around what we’d like to do. No shoulds, no have to’s. I’m an umbrella dweller, protecting my white skin from the sun’s rays. I did enough damage during my teens in search of a tan. I endured the pain and harshness of the sun’s rays, which never made me look healthy or beautiful, but instead rendered me red and peely. Now when everyone else glows from the sun’s warmth, I use blush.
Some gamble--I have given up gambling in lieu of the spa-there I know I’m a winner. In the evening, we explore the cuisine. These retreats provide an adventure that arouses the child in me.
This time the day before I left for the weekend, I had my annual physical. Dr Smollow asked about my concerns-any special tests he should administer? I remarked glibly that I thought my memory was fuzzier this year than last. He said would add a test that looks at memory and also checks for venereal disease. I laughed, not knowing whether he was kidding or not.
I felt fine-menopause seemed to be behind me. Hot flashes were in abeyance. My global warming for me had just turned into weather, no longer so drastic. And sleep patterns, well, I had made adjustments. Dr Smollow ran a complete blood panel, did an EKG and a chest x-ray. I left smiling.
After leaving the doctor’s office, I met up with Lewis, a man had had been dating for close to a year. We had planned to celebrate my birthday that night. I can’t remember anything about the evening. What I do remember is that at 7 in the morning when he walked me two blocks to my car and helped me hoist my suitcase into the trunk, he announced that he loved me. He said he thought I might be a bit disappointed that he had taken so long, but I just smiled. I think I already knew he loved and hearing him be brave enough to admit it was a wonderful moment.
I got into my car, opened my window for a few extra kisses before driving off to Starbucks for a latte. Life was good. I felt great, healthy, and attractive with someone to love and friends to play with in Puerto Rico.
The trip was filled will funny stories of our children’s exploits, our fantasies for the future, the beach, the breeze, the pool, fine dining at the museum in old San Juan Laughing, smiling, happy, I arrived at the airport for my return flight and headed straight to work when the red eye landed.

2008-06-14T07:51:00.000-07:00

They didn't time the walkers, but we couldn't resist the numbers-I swear we didn't coordinate the pinkness, but I considered calling us the Pinksters

The night before the Race, Donna and I got a hotel in Stamford and went to see Sex in the City. We got up early and drove over to register for the race. The temperature promised to hit 90, but in connecticut the humidity was pretty benign. We had our 5K around New Canaan, a pretty, thankfully, flat town. Donna and I analyzed a few funny people, solved major world problems during our walk. As we appropriated the finish line. a playful man offered to hose us down-something we both took him up on.

I thank you all for the financial and emotional support that got me to the race. Days like these offer inspiration that has got to offer healing.

The race was a success. thanks to all your generosity, I raised $2500. The MMRF raised $500,000. Kathi Guisti gave an inspirational talk about her own fight against MM adding as she stood across from New Canaan HS that she took her daughter to start HS this past fall something she didn't think she'd be around for when she was diagnoses in 99.

Join Me in the 5K Walk/Run for Research

2008-05-27T04:33:00.000-07:00

I will be participating the
MMRF 5K Walk/Run for Research Tri-State Area on June 8th in New Caanan, Connecticut

to race on my team
to pledge your donation
contact me by June 4 at cgmond@gmail.com

www.mmrfrace.org/tristate
Pre-Registration Cost: $25 Race Day Registration Cost: $30

Please make checks payable to: MMRF
MMRF Tax ID#: 06-1504413
mail to
Corinne Mond
334 West 87th Street
apt 7C
New York, New York 10024

Date:Sunday, June 8, 2008
Place:New Canaan High School
Time:7:00 a.m. Registration, 9:00 a.m. Start

Pa

The Tour 4 Cure

2008-05-27T03:33:00.000-07:00

Tour 4 the Cure: The Readings at Borders in NYC

Click on the pic to see it better

I decided that I wanted to be a part of the Readings' fund raiser the minute I read about it. Their mom had MM and managed to survive for five years nearly 20 stem cell transplant in Arkansas back in the day that Dr. Jaggonoth was cutting his teeth there. Her sons are country/rock singers and crisscrossed the country performing at Borders. The link below is a clip of their NY experience.
http://www.youtube.com/watch?v=KaTzaZu5sAU

I set a goal for myself to raise $20,000 this year to support much needed research for MM. We are on the cusp of transforming MM from a fatal disease to a chronic illness. With the help of my friends, we raised $2500.

While the Readings have completed their tour, you can still visit their site, listen to their music and even donate.
http://www.thereadings.net/

The MMRF

2008-05-27T03:29:00.000-07:00

The MMRF has funded over $60 million in research grants.
http://www.cbsnews.com/stories/2008/05/21/eveningnews/main4114975.shtm

What is Multiple Myeloma?

Multiple Myeloma is an incurable cancer of the plasma cells, important cells of the immune system that produce and release antibodies to help fight infection. Malignant plasma cells produce abnormal immunoglobulin making myeloma patients susceptible to infection.

How Common is Multiple Myeloma?

It is the second most common blood cancer, representing 1% of all cancers and 2% of all cancer deaths. This year, 14,400 Americans will be diagnosed with Multiple Myeloma and 11,200 will die of the disease.

What is the Multiple Myeloma Research Foundation?

The MMRF is a non-profit organization driven by a single purpose: to accelerate the search for a cure for Multiple Myeloma.