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.

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.

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.

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

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.

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.

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.