ROUGH MORNING

I wish I could write only cheery, upbeat messages but today I am not able to do that. I am very anxious about going into surgery although I really want the bone removed.  The questions are running through my head and of course there are still no answers nor will there ever be.  Feeling so out of control is frightening and I cannot even go past thinking about today because thinking further out is just too much to deal with.

I have a little more energy this morning and will head to Sloan in an hour for testing.  This I can handle.  And so that is what I will think about right now and will deal with later today later.  I cannot let my mind wander too far out in time because I just can’t deal with the thoughts today.

I am hoping I am well enough this afternoon to have my colleagues, Sue Simbol and Joann Manelis come have dinner here in NY with me.  It has been a long time since I have seen them and I am sure they will help cheer me up and keep my thoughts elsewhere this evening.

Hope you are all having a wonderful day.  It’s sunny and warm.  And for that I am grateful.

TOUGH DAY

The ride in the car to Brooklyn took its toll between the bumps and the nausea but we made it.  The wig is lovely and really looks just like my hair.  I even wore it home to check it out.  I was very fatigued and restless and slept the rest of the afternoon.  I’m not sure why, but 7:00 PM is a horrible time of day for me.  My temperature variates and my energy is very low but now at 9:30 I am feeling a little better.

Early tomorrow morning I will head over to Sloan with a wonderful friend, Gail Spira.  She has offered to take me for for my pre-op testing so Jan can go to work.  I AM learning to accept the offers of help from others but it is still quite uncomfortable.  If I have enough energy left after the x-ray and bloodwork, maybe Gail and I can get to the Post Office and Barnes and Nobles.  I WILL get there yet!

It seems the Skype system will let me read to my kids but the quality is questionable.  We will start with that as soon as we get a camera onto my computer in school and see what we can do from there.  I am so looking forward to seeing my kids.

And yet another story.  I received an E-Mail from a young woman the other day who has been reading my blog.  She informed me that her father-in-law is about to visit Dr. Russo on Tuesday in the hospital since he was also recently diagnosed with kidney cancer (looking for a hernia).  She printed out my blog, gave it to her father-in-law and it turns out we know each other well.  Our sons were the terrors of Solomon Schechter Day School in West Orange together.  On Friday night, I received an anonymous blessing left on my answering machine and today I found out that it was this man.  Today we had the pleasure of catching up on our families and talking about what we are facing.  We will help each other along as best we can but certainly use our prayers and energy to help each other through our journeys.

This blog has taken on a life of its own.  One that I love. There are so many people out there that are coming into or back into our lives and making it so much richer.  

A GOOD HAIR DAY

Yesterday was a resting, quiet day and well needed.  The steroid from the chemo is wearing off and so my energy level is decreasing and the aches and pains more mindful.  So I slept a lot, read a little, visited with a friend, and took it easy.

I am very fortunate that the drugs being used on me are not supposed to cause hair loss although I will probably see some thinning.  For those of you who know me, I have a lot of very thick hair, shoulder length.  At this point the loss of hair is the least of my worries and I think I can handle it if it happens.  I even teased Shira’s boyfriend Leo, who shaves his head daily, that if I get to the point I need a shave, he will be the first one I will call.  

Jan became very observant in the past fifteen years and wears a black hat to synagogue.  Traditionally, the wives of “Black Hatters” either cover their hair with a scarf or a wig called a shetyl which often times is more beautiful than their natural hair.  Since Jan and I are on different steps of the ladder in our religious observance, I have not covered my hair.  When I told my son Aaron I had cancer and was going to have chemo, he said, ” Dad is going to have a wife that wears a shetyl”. LOL. (This has never been an issue with us since Jan and I respect where each of us are on our personal religious journeys.)

Today, I am going to Crown Heights, Brooklyn, to the Shetylmacher (wigmaker).  I am having a shetyl made to prepare for hair loss and so I can look like Aaron’s mother at his wedding in July, just in case.  I am also hoping to use the shetyl for those times I do go to “Black Hat” occasions and wear it out of respect for the community I am socializing with.  This is not the first time I have gone here.  I took Rea to the shetylmacher last year, at this time, prior to her wedding to Shuie to have a shetyl made.  She looks adorable in hers.

I am so grateful for all the calls and E-mails that I receive daily.  I cannot wait to get to the computer to see what is happening in your lives as well.  This is an anxious time for me knowing that surgery is coming and I continually remind myself how important the outcome is.  I will admit that there is some fear here and my anxiety level has increased and so I am asking for more prayers and energy  at this time.  Just a “Please” is more than enough. Thanks.

BATTLE #1 BEGINS

The chemo treatments have been going well and if you read last night’s blog written by Jan, we have a new battle set directly in front of us.  I have been complaining about pain in the shoulder after biopsy, some of which is due to some bruising, but after all is said and done, there IS cancer in the shoulder.  OK. So I took step backward, stayed calm, and l listened to Dr. Healey, the Head of Orthopedics at Slaon explain that he is 90% sure the cancer is there but located on a unnecessary protrusion.  He can biopsy it and go in a second time after the results.  I looked him in the eye and said, “Tell me the truth.” He said it is abnormal and it is cancer.  He took out my scans, brought in a skeleton, and explained the exact location.  We can radiate, we can chemo it, or we can take it out.  I said “Take it out as soon as possible and make it no longer a variable.  When?”  He said if Dr. Bajorin agrees I am in an Ok place in my chemo cycle, Tuesday.  I said’ “Let’s Go.”  I want this disease out of my body and will do what I have to do to see Aaron and Stephanie get married on July 3rd and to meet my new grandson on August 25 (or before hopefully).  I am not afraid of the treatment, I am afraid of the unknown.  This we know and this we will do.  But look at the call from Bonnie Fertel yesterday.  It is impossible to not believe that the right messages are being sent my way at the right time through all of you.

On to more fun things.  We think we can get the computers system set up in my classroom by the time I get out of the hospital and I can start pod-casting to my kids.  Something to look forward to.  And my shoulder will give me more mobility and confidence that I can dress and take care of myself.  I always have to look at the bright side to each of the things that are happening to me and daily I grow spiritually, mentally, and physically.

During the night, I was reading a small prayer book by Rebbe Nachman of Breslov.  It read” In Praise: God, you have given me the physical, emotional, and spiritual will to overcome many obstacles that have risen before me. How many times have I faced what I perceived to be hopeless situations and withstood them-and discovered creative solutions through which to surmount and master them. You’ve strengthened me again and again.  I know that you will never fail me.”     HOW APPROPRIATE.

Keep those prayers and energy a comin’.  They are what is pulling me through.  I really appreciate each and every one of you pulling me along with you.  My Love and prayers are returned to you daily. 

 

Two Steps Forward, One Step Back

We are just back from Sloan Kettering where we saw Dr. John Healey, FACS, Chief of Memorial Sloan Kettering Cancer Center’s Orthopaedic Service, and a Professor of Orthopaedic Surgery at the Weill Medical College of Cornell University. Dr. Healey read yesterday’s MRI and said that indeed, Debbi has cancer in one of the bones of her left shoulder.

Naturally, we had our doubts… after all, the shoulder biopsy came back negative and the bone scan said “clear” but Dr. Healey touched Debbi’s shoulder at a certain spot and that exact spot was the center of Debbi’s pain. He then had a human skeleton brought into our examining room and coordinated the image of the MRI and the bone scan as he indicated the exact location where he feels the cancer is rooted.  

If I have it correct, Dr. Healey says the involved bone is called the Coracoid Process, at the edge of the projection, a part of bone that is not needed. Dr. Healey plans to do a biopsy on Tuesday May 6th, fully expecting to find the cancer he pointed out to us, and upon finding cancer, he plans to remove a section of this bone the size of the tip of the pinky finger, freeze exposed surfaces cryogenically, and do whatever else is necessary to treat the shoulder cancer aggressively.

Once again we have found such benefit from our Engineer, Dr. Zelefsky who arranged the consult from Dr. Healey. Before we had even gotten back to the West Side, Dr. Healey informed Michael of his decision and Michael wrote us an email concurring. As Dr. Healey mentioned, a coordinated effort from many directions is needed to beat this, and with Dr. Zelefsky’s quarterbacking, it is evident that we have an awesome team to do battle with this cancer. 

Also on our team, thankfully, are all our loyal friends and family who have been calling, writing, saying tehillim, saying prayers beseeching G-d to bring healing to Debbi and to all who are suffering. 

After reading Debbi’s previous post (Today’s Gift), I really see where Debbi got the strength to face Dr. Healey upon hearing the news and reply, “OK, lets go after this. I have the wedding coming up and a grandkid on the way. Lets go.”

Bonnie Fertel conveyed the message of hope and success overcoming cancer in her scapula. So, when Debbi heard the news concerning her own shoulder, she really took it in stride. As Debbi wrote, (HELLO…IS THIS G-D TALKING?).  Debbi is certainly a strong and amazing woman, a great role model for our children, and I feel extremely fortunate that she is my wife. 

Today’s Gift

I received a phone call this morning from a friend, Bonnie Fertel, who I knew when we lived in the Caldwells for 15 years. She had breast cancer while we lived there and I remember her journey well.  Bonnie tells me that she went 12 years clean and 2 years ago the breast cancer showed up in her scapula. (HELLO….IS THIS GOD TALKING?).  She said it was treated with medication and radiation and she is now clean again.  Not only does this remind me that the cancer can come back again but it also reminds me that if it does, or those bone scans were incorrect, there are treatments to continually keep me going for as long as needs be. Thank you Bonnie (god’s ambassador for the day) for allowing me to put some of my fears to rest.

Somehow, this morning’s post did not come up so once my technical engineer figures out why a new out of order blog will show. 

Chemo #2 Day #2

Feeling a little less energetic than last round but thank goodness for the large anti-nausea pill and the steroids that should keep me up and running today.

I had BIG plans for today but due to the rain and how I am feeling I’m not so confident I can do it all.  I had hoped to get to the post office, Barnes and Noble to pick out a few new books for my kids, a restaurant to make something special for dinner and to Buttercup Cupcakes since it is Jan’s birthday today. He not in the celebrating mood. But he is always hungry.

Sue Simbol and I  talk about plans each day at 6:30 AM.  This is how we commuted and shared what was going on in our classrooms. She went to my room yesterday to tell the children that the butterflies that they release flew right to NYC past my window and how happy it made me. Dulce had the most charming smile from ear to ear that Susan said she wished she had a picture of her.  She is also a new glasses wearer “like Ms.Debbi”.

We are working diligently to podcast into my classroom and this is a special goal for me.  Dr. Malleo has  also suggested I write an article about our endeavor.  I always love to see new ways of teaching available to our students especially  a generation of students so computer/tech  oriented. Sometimes I think that is the way to attract these kids to learning since it is very difficult for them to grasp knowledge with just auditory stimulation.

Hopefully today will be uneventful= excellent.  I will take time the Meditate and make sure that my higher power knows how grateful I am for another session down and a brand new day.  Three more sessions and we can get the first set of scans which will tell us how the drugs are working.

CHEMO #2 (AFTER)

For those of you who read the blog very early in the morning, and I may try to sleep past 5:30AM, I thought I would write a little tonight so you will not be disappointed.

Shira and Jan went to chemo with me.  Here comes miracle #1 (Remember they don’t need to record on the lightening bolt meter).  Jan hails us a black car outside the apartment.  We tell the driver where we are going.  He looks at me and says,” I took you to Lennox Hill Hospital a few weeks ago to get your gall bladder out and she was trying to reach you to meet her (nodding to Jan). How did it go, I’ve been praying for you”.  We told him our short version of the story and he promised to continue to pray!

Chemo itself was fine for me even after the fear that my numbers may put it off.  The doctor decided to lower the “Jellybean” drug 10% since that is the one that causes the loss of white blood cells quickly.  I will have to go in on the Friday after next Thursday’s chemo to get this special shot to also help those numbers and keep me from going down for the count again.  Shira was very sad to see me hooked up to the IVs and decided afterward to return to Boston.  She cried all afternoon and is having a very difficult time accepting that her strong mother is fighting for her life.  She left me a beautiful, heartfelt letter which I will treasure forever.

Tonight I had to return to Sloan for another MRI.  Next little miracle.  Black car pulls up in front of the apartment.  We give the address. the driver says, “I took you to the hospital last Tuesday night and I was very worried about you.  I am so glad to see you looking better.  I prayed all week and will continue to pray for you.” 

This is NYC!!!!!!!!!!Two separate cars, two separate drivers and second time each has taken me for medical help!  It amazes me the people who are touching us daily and helping us with their strength, prayers, and energy.

Time to let today close and look forward to tomorrow.  Will add to the blog when I get up. Promise 😉

CHEMO #2 (BEFORE)

It is 5:30 AM and after a very difficult night sleeping. I am getting ready for my morning at Sloan.  I am praying all the bloodwork comes back so that I can receive my treatment.  Staying on schedule is so important not only for the cancer treatment but for me mentally.  The reason chemo is given in three week groupings is because it takes three weeks to build up the white cells (The fighting good stuff) and the cancer cells take much longer.  We want to hit those suckers when they are still down and out! Mentally, I am on track to have this kidney out in August so that I can return to school in September as close to opening as possible.

I am very excited! Dr. Colleen Malleo, the director of the Early Childhood Program, has contacted Jan and me and is supportive of podcasting into my classroom.  She and Jan have been emailing each other and if somehow they can do it,  I can continue to teach sign language and read to my children as well as talk back and forth with them, see them and they can see me. Not necessarily able to give hugs and cuddles but a  GERM FREE way of staying in the classroom.  I love the possibilities of using this idea for other support for our children. Out of something negative we can build something positive.

I am certain Jan will take over the blog as the chemo is dripping into my port. Otherwise, if I am up to it, I will report again later.  I do have another scan at 6:00PM at Sloan to check out pain in my shoulder that I still have from the biopsy and I want to spend time as much time as possible with my youngest, Shira (who drove in from Boston to go to chemo), while I can keep my hands on her.

PRAY REALLY HARD. YOU ARE ALL WITH ME.