THE MORNING AFTER THE PORT

It’s a new day and I am so happy to see a little sunshine peeking through the clouds.  The port is in place and it is sore but it is better than last night and will be better yet tomorrow.  Jan and I are continually mulling over the research on which treatment to go with and just when we are sure we chose the appropriate one…..we read some more.  I am certain once this decision is made, our lives will be much easier and we will just go with it.

Three weeks ago, I knew nothing about kidney cancer.  Then I was stunned to find that I have it.  Once I got used to that idea, then decisions about where to be treated had to be made.  Now, with no knowledge about this disease and how it works, we have to make the decision on which treatment to use!  Ask me about a young child’s behavior or speech or socialization skills and I have experience to answer those questions.  This is a very important decision to make about saving my life and I have nothing to go on.  I must admit none of this sounds like a lot of fun but I am hoping if  go through the bad stuff there will be fun on the other side.  Most of the time I just want to escape.

I wander over to this computer hourly to read notes from all of you.  It really is a lifeline to so many special people.  Some make me laugh, others cry, and all of them warm my heart.  I am so blessed to have so many wonderful people in my life.  Thanks.

I have a baby blanket to finish, another one to start, and wedding and grandbaby plans to make along with upcoming Passover.  So for the moment, the cancer discussion will be put away and I will try to live my life as best as I can.

 

 

Port Visit

Debbi just came home following surgery to implant the port. What a difference between today’s experience with twilight sleep and her bout with the anesthesia used during the biopsies.  First of all, she made it cross town in 7 minutes, arriving at 7:30am. They were ready and took Debbi immediately into prep, beginning the procedure at 8:30, finishing by 9:15. Shortly thereafter, Debbi called me and sounded amazingly lucid. I had been told that it would be at least until 1pm before she could leave so I was only heading over to York Ave when Debbi was moved to recovery. We talked a few times as my cab waded through cross town traffic. 

I really missed Debbi this morning and could not wait to see her. When I finally arrived, she looked really good. Not groggy at all. She had already talked to each of the kids so all that was left was for her to tell me how she asked the surgeon to adjust the port placement so that she could wear her gown to Aaron & Stephanie’s upcoming wedding. I guess the surgeon has had many such requests and was able to customize the placement. 

We jumped in a black car and were back to the West Side in minutes. Go figure. 30 minutes earlier there was traffic every which way. It was good to get Debbi home quickly so that she can relax for the rest of the day. She seems bright and cheery now that she is home and I am looking forward to spending the next few days with her.

I am hoping that she feels well enough tomorrow to attend services at Shlomo Zalman Zelefsky’s Bar Mitzvah. He is Michael’s son and it would certainly be special to wish Michael and his family a special Mazal Tov after all he has done and continues to do for us. Plus, many friends on the Upper West Side will be there and I think it would be wonderful for Debbi to receive hugs and warm wishes for improvement from these special people.

STEP #2 A BREEZE

I arrived at Sloan at 7:30 am, went into surgery at 9:30 and I am already home.  The staff at Sloan were wonderful and I feel so well taken care of when I am there.  I am so grateful this step was a breeze.  Rest up this weekend and prepare for the scans on Monday.  One small step and a little more hope.

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.