WIDE AWAKE

Thank you all for your E-Mails at debbi @buckler.com since the blog is not picking the comments up unless you sign your name in somehow.  Anyway, I am wide awake mulling over all the info we received today, thinking about tomorrow’s procedure, and weighing the seriousness of what lies ahead.  There are no straight forward answers to anything and as I said before only more unanswerable questions.  I must admit FEAR is raging everywhere inside and I am doing everything and anything to stay in moment and not think ahead. Ahead is just too frightening. I am fighting off any medication for anxiety or sleep because I am so baffled.

 My darling Jan is a rock.  He does the research, tries his hardest to explain it to me, watches me fall apart, and pulls me back together.  He is such a gift and I am so fortunate to have him in my life.  All with kindness and calmness.  We should all be praying for him to be able to weather this storm in good health and sanity.

My son, Joshua, has arranged to spend 10 days working in NY so he can go to my first 2 chemo appointments with me and to just spend time with me.  Rea, our pregnant eldest, calls constantly and offers to do everything and anything and her husband, Shuie prays and buys me books.  Aaron and Stephanie are amazing and plan to tape their last Law School Classes before finals so that they can come to prepare our Passover Seders, and Shira is finally talking to me again now that we both have admitting we are scared to death.  I am one very fortunate, fortunate parent to have these amazing  people in my life.  I must admit, I am not very surprised, they have always been the best kids.  My accomplishment that I value most.  Thank God this is not happening to them.  This is what keeps me going through this.

I really wish I could sleep since I am due at the hospital at 7:30 am for the next procedure.  I am not sure how people do this when they come from so far away for treatment.  I am so grateful to live only a 5 minute cab ride from the hospital and testing locations. On a funny note, I guess I missed my last chance to eat since midnight was the cut-off!!!!

Thank you all so much for the love, caring, support, and prayers.

Holding our breath

So far, we have really only made one choice… to seek assistance and follow the advice of Doctors and Staff at Memorial Sloan Kettering Cancer Center. Now it is time to make a second choice. With the port going in tomorrow, we have one week to decide on the chemo regimen to follow of which we have been told that there is no wrong choice. However, one may prove to be more successful in Debbi’s particular instance and that is, of course, what we care about most. 

Course #1, the standard, calls for 6 three week cycles of Gemcitabine & Cisplatin. Course #2 involves participation in a Phase II clinical research trial of Gemcitabine, Carboplatin, and Bevacizumab. [In case you were interested, Bevacizumab is more commonly referred to as Avastin]. Cisplatin is stronger and more invasive of the kidneys. Avastin is one of a new class of drugs that has been shown to be effective in other cancers and works by denying tumors blood, oxygen and other nutrients needed for their growth. The study is designed to find the effectiveness of Avastin in patients that can not tolerate the additional strength of Cisplatin. Since Debbi is very sensitive to drugs to begin with, we wanted to learn about this alternative. 

We naturally listened carefully to the choices we were given and have been doing some research on line in order to learn more. Certainly, Dr. Bajorin did not pressure us either way. He only wanted to let us know the possibilities. Side effects vary widely. Tomorrow, while Debbi is having the port placed, I will try to contact some oncologists I have met over the years to try to gain some additional insights. Debbi’s comment while reading what I have written so far is… “OMG, this is really serious. Maybe I shouldn’t do anything” commenting on the deleterious nature of many of the side effects.

It is very scary looking forward so the best we can hope for is an immediate notification that the chemo process is working. That is what we have to pray for. That we choose a good chemo regimen and that it quickly works to measurably shrink the tumor in her kidney. I guess the tumor size will become the standard because we have not yet heard about any way to gauge effectiveness via blood tests or metrics away from the kidney.

With another invasive process tomorrow at 9:30, a bone scan and a CT scan on Monday, it still seems that there is much to accomplish, in addition to refining our decision on the chemo regimen, before chemo is to start on Thursday the 10th.

 

What the biopsy said…

In addition to supplying family and friends with important information such as Debbi’s feelings, hopes, fears, and dreams, we are using the blog to record many of the test results for our own records. If you are not interested in this info, please simply scroll forward/backward as necessary.

As you know, biopsies were taken of the right kidney and the left scapula. The diagnosis was:

    1) Kidney Mass, Right Kidney, Biopsy

        Compatible with high grade urothelial carcinoma. The pattern of tumor invasion is unusual in that it appears to have a tubular architecture surrounded by basement membrane-like material in a background of myxoid stroma. This likely represents intratubular spread of the urothelial carcinoma into renal tubules. Immunohistochemical stains are consistent with urothelial carcinoma (CK7, 34BE12, 4A4 Positive; CK20, CD20, CD31 Negative).

    2)  Scapula, Left, Biopsy

         Blood and hematopoietic elements. No carcinoma seen. Multiple levels examined.

 

Reading between the lines, we are very happy that the scapula is not involved even though there was some evidence of cancer in the PET scan. When the biopsy was done on Debbi’s right kidney, the interventional radiologist, Dr. Constantinos T. Sofocleous, was able to place the probe and use the CT scan to verify that the location of the probe was consistent with the location of the mass. However, this verification process was not available for the biopsy of the scapula. Bone is solid and dense. Therefore, the radiologist did his best to use existing scans and multiple screens to try to triangulate the area for the biopsy. Considering that the involved area was approximately the size of the head of a thumbtack, it was difficult to be 100% certain that the biopsy was taken from the exact area. Four sample bone scrapings were taken with the largest one measuring approximately 0.25″. 

Where does this leave us??? Since we are not absolutely sure that there is no involvement outside of the kidney, we must do chemo in an effort to shrink the tumor in the kidney as well as to treat any possible cancer cells that may be traveling through the blood stream (as well as any possible cancer cells in the left scapula). If the chemo is successful in shrinking the tumor, surgery to remove the right kidney (or part of it) becomes possible. 

In the next post, I will try to explain the choices for chemo and how we move forward.

 

     

The Beginning of the Storm

Today was the day we met with Dr Bijoran and went over the biopsies, treatment options and set things into motion.  Dr. Bijoran turned out to be an excellent practitioner and was patient and precise in explanations and fielding our many question.  It was a long day, I need to rest so the medi-port can be inserted tomorrow morning and hopefully I will be home early afternoon for a weekend of rest.  Jan, of course, will translate what the plan really is since I was so overwhelmed and there was so much information to absorb that I was shutting down and not really comprehending what they were talking about.  The one thing I do know, the next 6 months belong to Sloan Kettering and I am going to have to accept that the life I know will have to adjust to their music.

Love hearing from all of you.  You are never bothering me with your caring calls and E-mails.  It makes my day.  Hopefully I can go back to school here and there and more often once the chemo situation is stabilized.  Keep praying.

The Lull Before the Storm

We have gotten the word that Jan and I will meet Dr. Bijorian, the oncologist on Thursday at 11:30 am.  I am terrified and I know my darling Jan is as well.  I really do not want to know what the biopsies have shown but on the other hand, hearing the reality will take us to the next level for a treatment plan.  Friday morning the port will go in my chest and I’ll have the weekend to recuperate.  I have been trying to go to work each day but feel like I hit a wall around 1:00.  Today I just came home and went to bed.  My new plan…..I am taking a blanket and pillow to school and will  try to nap during my lunch hour and see if I can make it through a full day.  I realize that my days working full time this year are running out, but being with the children, seeing my colleagues, and keeping busy is very centering.

I think the most frustrating part for me is for every question running through my mind, there is no answer.  How did this happen? Where did it come from? What could I have done differently? How do I protect my children? What will my life look like now?

I must remind myself that answers really don’t matter at this juncture.  I must be grateful for the wonderful life I have enjoyed up to the present, take the next step, pray, and hope for the best.  I do know that now I spend each and every minute just glancing at my precious soul mate, my children, my family and friends and smiling at each and every nuance, every gesture, and every words that is said.  I am a very fortunate person to have such a full life.

 

FRIDAY NIGHT AFTER BIOPSY

Well I am now awake and ready to eat again!  These are good signs.(LOL)  There is some discomfort from the biopsies but overall it feels good to have Step #1 behind me.  Now we wait for results of what is really going on in there and the plan for the immediate future.  One step at a time…..that’s my mantra while I wait.

Thanks to all for the phone calls, prayers, and positive energy.  I think, of all of you as I wait in the waiting rooms, doctor’s offices and on tables before the anesthesia takes effect.  I am so blessed to have so many people I love and respect offering their strength and well wishes.  This gives me tremendous motivation to fight and I AM A FIGHTER.

The Biopsy

I reported to Sloan at 11:15 but the biopsy did not even begin until 2:30.  What a busy place.  It is almost more frightening seeing the numbers and ages of people with cancer than dealing with your own illness.  And the attitudes of the people were amazing.  The staff is very upbeat, gentle, and caring.  Many patients are cooperative and as with me, hoping for the best.  And then you have those who complained the entire time about the wait or wanted to share the gory details of their story.  My Secret: I took my knitting with me and most people either commented on its beauty or just left me alone.  I liked the solitude of knitting and listening.

The biopsy itself was very uncomfortable since the radiologist informed me that the second MRI was inconclusive on the scapula so they are going in.  This saddened me because they have not ruled out the possibility or the spreading but he said the spread is so small that it would even be difficult for him to achieve.

 

I was fortunate enough to be highly sedated and although I sometimes felt the pain  and could hear what they were doing, overall I was very out of it.  The payback was that at 8:00PM I was still heavily sedated and very nauseated.  Finally we arrived home and once I hit my own bed, I was gone for about 4 hours. A little more pain meds and I slept the rest of the night like a baby.  

It is 6:30 am and I am uncomfortable but glad the first step has been taken.  Jan and I had the grandiose idea that I could make it to the Cape for the weekend but the reality is…..More meds and back to bed for awhile.  I would so love to see the beach but even I, who would try anything to get there, know that is not the smartest thing to do.  So I will close my eyes and imagine.

 

Thank you for all of your prayers and strength.  The blog comments are not working properly at this point so if you would like to contact me: jan@buckler.com or at home.

 

DAY BEFORE BIOPSY

What a crazy day.  I decided to go to work to make sure I was distracted all day.  Jan called at 8:00am asking for my PET scan discs that he needed to drop off at the doctor’s office across town by 9:00.  That wonderful man took his motorcycle and raced the results across town.  The doctor’s were meeting about the plan for tomorrow’s biopsy.  At 10:00, my cell phone rings again and the hospital wants me to report in at 1:00 for another MRI!.  I arrange to leave work, get to the hospital and have the MRI.  I then ask why? I just did this scan last week.  The doctor tells us that the last tests are inconclusive that the cancer really spread to the shoulder and they just want to make sure before they biopsy the area.  This gave us a little hope since the scapula is the only place it seems the cancer has spread from the kidney and would make things less complicated if it were true.

 

And so tomorrow morning, I will spend the day again at Sloan for the biopsy and pray for the best.  Results will probably be a week later.  So many people around the world are pulling and praying for us and I truly believe that that is what will help me get well and the doctors will assist!!!  Who would have thought from a person who hardly believed there was such a thing as a God 7 years ago!

A New Week, A New Stage

After all the tears and fears, I am now less emotional and very very angry about this whole nightmare.  I keep wondering how this happened when I have never smoked, drank, watched my diet, exercised, lived a simple life and did what my doctors have told me.  Granted I have lived 54 years in excellent health with no surgery or hospital stays.  But the question Why is still ruminating in my brain.  I am trying my best to accept that this is the way it is supposed to be at this time but I am still angry.  Hopefully I can channel this anger into energy for the big battles.

 

The good news is that we think the biopsies and port placement may be this Friday, March 28th.  Step one is just a few days away!

Thank you for all the phone calls, cards, emails, and prayers.  You are all in my thoughts and I realize how fortunate Jan and I are to have such a tremendous support system.  We both love you.

PURIM

Today is the holiday of Purim, one of my favorites.  Tonight, Jan and I went to hear the megillah reading at Hineni.  Rebbitzin Jungreis gave me a blessing for good health and also suggested I read Psalm 20 seven times a day.  The megillah reader was Dr. Michael Zelefsky who is the “engineer” setting up my treatment team at Sloan-Kettering,  He is such a charming gentle and competent man and has assured me that I am and will continue to be with the best team to make me well.  

 

While waiting for the biopsy appointment to be scheduled, I am enjoying this lull before the storm; going to school, spending time with my precious husband and children, and just taking life a moment at a time.  I am so grateful not to have to deal with the cancer for right now.

 

Thank you to all who have called and written notes.  I am truly a very blessed person having so many people in my corner.