November 26, 2008

Happy Thanksgiving!

Well, it is almost 11 pm and Joe, Karen and Kate are putting the final touches on the Thanksgiving Feast. I am so tired, I can hardly keep my eyes open and I did little more than supervise - well, maybe a little cooking but not much. I did have fun keeping an eye on Gingie Girl but she moves a little too quickly for me! Actually, I stepped on her poor little hand today as she was behind me on the floor and I did not know it - I don't know who cried more, the baby or me. I felt terrible but she was so shocked to see me start crying, she stopped and came over to pat me. Her hand was fine, thank goodness. One really forgets how quickly these little ones can change position.

Jack has been doing all the running around and shopping, etc. We all have special requests and chores for him. Tonight he put the giant, inflatable turkey up on the front lawn - I'm not sure how the neighbors feel about it but I know he is excited for Agnes to see it tomorrow morning. Funny how your ideas change, when he got this thing a few years back, I had a fit. This year I could not wait for him to inflate it. I'll try to take a photo tomorrow and post it.

Happy Birthday to Mary Linn.......Happy Thanksgiving to you all as it will be Thanksgiving before you read this.

God bless us everyone!

As always, love from me to you!

November 25, 2008

P.M. P.S.

Just an update since I wrote early today.....the staff at Sloan have arranged a chest CT scan, blood work and a EKG for Monday. A lung biopsy will be performed on December 9. Depending on the results of that biopsy, my course of treatment will be decided. If the lung cancer has metastasized, then it will be chemo, chemo, chemo; if it is plain old pancreatic cancer, then surgery will follow pretty soon after the results are in. Incidentally, the staff at Sloan called this afternoon to tell me the slides finally arrived. Woot!

As always, love from me to you.

Pilgrim's Progress

I knew when I awoke this morning from a dream where I had no hair but looked exactly like Audrey Hepburn that this would be a better day than yesterday! My first phone call was from Joe who is bringing my Gingie Girl early this afternoon........Joe is coming today to help prepare for Thanksgiving. How many people can brag about a son-in-law like that? Karen will join us tonight and hopefully the rain will stop by then so we can cook dinner out on the grill.....it is always so much quicker and easier to cook outside.

My second phone call was from Sloan Kettering. They have not received the slides yet but hopefully they will arrive today. Ann from Sloan called to say they would like to do another CT scan and a lung biopsy at Sloan to be absolutely certain what the type of cancer actually is as the debate still goes on. It is a relief to know that these procedures will be done as soon as possible. They will set them up and then tell me when they are. It will be within the next week for sure as I have been told not to take any aspirin or blood thinners. Sloan understands the need for quickly moving the procedure along. Ann was very understanding of my fears and frustrations. So, I rejoice that some progress is being made and that I will soon be in some type of treatment. What that will be still remains to be seen but I am back to being optimistic about the outcome as well as fearful of the process. Did you ever feel happy and sad at the same time? That about sums it up.

Today I will be having a Starbucks coffee - latte venti and a piece of pastry - to celebrate this good news with Crone McMahon. I will also be able to introduce Gingie Girl to this Crone which will give me great pleasure.

Now I am going to try to get an appointment for a really short, Audrey Hepburn type pixie haircut before Thanksgiving. I will keep you posted as this latest news unfolds.

I'm back to

Believe!

As always, love from me to you!

November 24, 2008

Spice in my Life, My Gingie Girl

Monday, Monday - gotta hate that day although maybe we should love each day in spite of its potential for disaster.

I had a delightful weekend with my family, including Agnes Rose who was adorable in her red and white polka dot blanket sleeper with a gingerbread girl on the breast and has now been nicknamed (by me) Gingie Girl which sort of goes with her gingery/honey blond hair. I thought her Mama would save this for Christmas Eve in Wisconsin but Mama feels she may outgrow it too quickly. (I think Mama was being sensitive and knew I wanted to see Gingie Girl in this snugly outfit and I appreciated the surprise.) While her Papa babysat Agnes, Grandpa, Aunt Kate, Mama and Nana set off to shop for a Christmas outfit for Gingie Girl. First we went to Lord & Taylors but they had very little choice so we rushed off to Macy's to catch their sale. Good thing Grandpa came along as he did his usual dazzling coupon dance and managed to purchase three outfits for almost $10 less than one of them cost orginally. Wow! this was a major coup and we were home in an hour! Macy's had the outfits marked anywhere from 30 to 70% off but Gingie Girl got a 100% discount thanks to Grandpa - this is a good way to shop.

It is hard to imagine that Thanksgiving is three days away and one thing I am really thankful for is that Joe, Karen and Kate will be help cook again this year. Yesterday, we were discussing various menus and as long as the stuffing remains the "traditional" one (that means the one I make) and the gravy remains the same (especially for Joan who loves this thickened pot of vegetable soup which contains some of the turkey drippings and chicken broth), and the turkey is big enough for all of us, Joe will be experimenting with a few new vegetable recipes. Mmmm! I can be the chief sampler - especially the special sweet potato dish he has in mind.

Now to my Monday morning........

I was relieved and happy all weekend to know that my slides were finally off to Sloan on FRIDAY as that is what I was assured when I called and that Sloan would have them today and hopefully I would have an answer sometime before the week's end. NO SUCH LUCK. This morning, G called from NSUH to ask for my credit card number again as they were GOING TO SEND THE SLIDES TODAY - MONDAY . Even though I was told they were mailed Friday, today I was told they were not mailed Friday because they did not want them to sit in the mailroom over the weekend. One would have to think that a mailroom in a hospital like Sloan Kettering would refrigerate or have a special way of handling this type of sitution. I have to admit I lost my cool and got very, very angry. I was so angry and tried very hard to control it, I have a pain in my chest and this happened an hour ago. G said that I ASKED FOR THE WRONG SLIDES the first time.....I just checked the letter I sent and I see that I did not specifically ask for pancreatic slides (since I am not a pathologist) but simply asked them to send slides of my recent EUS biopsy - therein was my mistake - thinking that since it was a PANCREATIC BIOPSY THAT PANCREATIC CELLS WOULD BE SENT. Obviously I was wrong - someone just suggested that I should have picked them up and delivered them myself but they could have given me slides of Pinocchio's nose and I would not have known the difference. WHAT IS WRONG WITH THIS PICTURE? Well, the one thing it has clarified for me is that if I have to have another biopsy done on my pancreas or on my lung or any other part of my voluptuous being, I will have it done at Sloan. I feel betrayed by a hospital that I have had a wonderful relationship with for almost 40 years - ever since my ankle was set there on my wedding day and it was still called Manhasset Hospital. Would I really have another biopsy there with a pathology department that is causing me such extended upset?

I've been trying to put a good face on this but truthfully, I am terrified. My initial PT scan was on October 3 - it is now November 24 - it will be 2 full months before I am diagnosed because weeks have been lost with these mistakes in mailing the correct slides. When you are dealing with pancreatic cancer - even though mine is in a "good" place and probably curable (at least in October when the first scan was taken), I have lost 2 months - TWO MONTHS of my life waiting for a decision on a disease that has the potential to kill you in six months. (I watch the commercials for the Lustgarten Foundation, too.) In this litigious society, my first inclination is to call my attorney and see if this incompetence can be addressed legally but I know once I cool down and know that the slides are where they should be - eventually - tomorrow, I hope, I won't do a damn thing because I am too tired and too worried and too sad.

Sorry to dump all this on you today but I am alone at the moment and instead of screaming and banging my head against the wall, I turn to my earthbound source of strength of courage. You.

Thanks for listening.

As always, love from me to you.

November 21, 2008

Favorite Author's Newest Book

Life is filled with ironies. I have been reading - non-stop - one of my favorite authors - Anne Rivers Siddons. I was so happy to find her new book Off Season and have had my nose stuck in it for several days now. One of the reviewers says that you don't just read her books, you dwell in them. This is so true and I have loved her since Shirley loaned me Outerbanks ten or twelve years ago when I was visiting Shirley and W and had nothing to read. Well, the reason I am compelled to share this information with you is that I am mid-way through this great book and the plot unexpectedly turns to the protagonist's mother dying of cancer. Sorry to ruin the book for anyone of you who wishes to read it, but she dies. Dead. I just left the funeral service with tears running down my face for this poor woman. Only me - I would be the only person I know who would become so deeply engrossed in a book to take my mind off my current woes and find out that one of my favorite characters - one that I pictured as myself from the beginning of the book - dies of cancer. First, of course, there are several chapters of her battle with chemo - then BAM - off she goes into the Light. Don't let this stop you from reading this or any other book by this incredible author. It just tickled my very warped funny bone.....and it was breast cancer and it was in the early sixties so times and treatments have changed considerably in the last forty years and I don't plan on entering the Light anytime soon (been there, done that once before - not worth the trip again so soon.)

Kate is coming in from Boston by bus tonight. She is making the trip to spend some extra time with us and Agnes since next weekend will be a busy one for her - ten year high school reunion on Friday and a wedding back in Massachusetts on Saturday. No moss grows under her feet for sure!

I called Sloan and they did not receive the slides so I called NSUH. The slides went out this morning (Friday) which means they won't be read until Tuesday or Wednesday. I am frustrated that I won't have an answer until after Thanksgiving - and, it frightens me to think that two more weeks are wasted while malignant cells continue to party in my pancreas and lungs. I am so exhausted and I'm sure it is because I am not sleeping through the night and cannot think of anything but this party going on inside me. Seeing Kate, Karen, Agnes and Joe this weekend will take my mind off things.

There is no doubt in my mind that I will win this battle, I'd just like to know who the enemy is and what tools will be used in combat. My warriors are all lined up, capes ready!

If you don't hear from me over the weekend, I may be on hiatus enjoying the family visit.

Believe!

As always, love from me to you!

November 20, 2008

Pas de Deux

Two blogs in one day......

I did not want today to go by without a Happy Birthday greeting to my godson, Ted. The day he was born was one of those memories that burn into your brain and you can recall with total clarity.

The kids today would find it hard to believe but I was a freshman in high school and very excited about the impending birth of this baby whom I knew would be my godchild. I was so thrilled. It was lunchtime at school and I had to go to the Principal's office to ask for special permission to use my own dime in one of the two public pay phones in the building to call home to see if the baby had been born. Talk about oppression! Can you imagine a world where you had to GET PERMISSION to make a phone call on a public phone to your own home? Well, that's the world in which some of my Crones and Miss Brodie were raised.

Anyway, that beautiful baby boy is all grown up and a great guy. Hard to believe 47 years have passed, though!

Happy Birthday!

As always, love from me to you!

Simon Says Take One Step Back

I awoke this morning with a feeling of relief as some progress has been made in the battle. The pathology slides were in the hands of those at Sloan who would ultimately make the decision as to what course of action will be taken. I feel calmer knowing that a firm decision will be made within a few days and some type of action will take place in two weeks or so be it surgery, chemo or whatever the specialists decide. I feel, ironically, free - free because even though it is my battle, I can stop worrying about the battle plan for a little while and just relax. Ha.

The phone rang. So much for relaxation....it was the nurse from Sloan saying the slides they received yesterday were from my stomach not from my pancreas. NSUH had sent the WRONG slides - and incidentally, just mentioned in passing, my stomach seems inflamed. I did not even ask a question about that as I was so astounded that this mix up had occurred....after all, we are dealing with someone's life here. These are keys to a diagnosis which could spell life or death - not paint chips.

So, of course, my first reaction is total outrage and I call NSUH pathology department and I GET A RECORDING with a menu - nothing which will guide me to a human to correct this major problem. (At least major to me.) I hang up and fume for a few minutes (feeling that inflamed stomach starting to heat up) and decide to call my Onco Man who is my hero as are the gals in his office who are such incredible human beings. The gal I needed most was not in yet but would call as soon as she arrived. I did explain what I needed to speak to her about.

Then my brain kicked in and I called the general hospital number for NSUH and asked to speak to a HUMAN in the pathology department....actually, I did have a first name but wanted any human at this point. BINGO. Got through on the first try to the gal who had been so helpful for the past two days - except she sent the wrong slides. Last night I faxed her to send lung slides as well so a comparison could be made so there was a little confusion as to what I was talking about. Finally, in my calmest voice, I said - Stop talking and listen to what I am saying. The slides you sent to Sloan which they received yesterday were incorrect. They were slides from my stomach and I am being diagnosed for pancreatic cancer. The biopsy was on my pancreas - my permission note clearly stated PANCREATIC slides. You are a very kind person but you made a mistake and I need you to fix it - NOW, TODAY. She finally got it and said I needed - pay attention to this - to speak to someone in another part of the pathology department who had the pancreas stuff. She was working on my lung stuff and after I explained my pancreas request to this other person, they would send the slides together as quickly as possible. Before I could say pancreatic cancer, I was switched to the cytology area of the pathology department. I spoke to another very nice woman who understood my problem after only 2 repeats of the explanation (and English was not a second language for either of us.) I think it was when I burst into tears and said I could be dead of this disease before anyone at NSUH got the correct slides to Sloan that she grasped the true nature of the problem. (A little dramatic, perhaps, but it worked and it was a truthful assessment on my part at the moment. Although I was so upset, I could have had a heart attack and saved a whole lot of stress.) She assured me she would do her part this morning and bring the pancreatic slides over to the other side of the room where my lung slides would be waiting to be reunited with their old friends and they would be mailed together - hopefully today. I cried a little harder and begged her to make sure they would be mailed today. She said she would do her part but Lung Woman had to do her part as well. Considering Lung Woman already screwed up, I can only hope she would give it her all. Pancreas Woman gave me her direct phone number and said she or Lung Woman would call when they were ready and in the overnight mail. I'm sure one of them will call for my credit card number - at $25 a pop for mailing, this is a booming business. All of this happened between 9 and 10:30 and it is now 1:15 and I still haven't heard that the limo had been called for transporting my slides.

What I learned in all of this was that even though I was burning with fury over the mistake, it was important to remain calm and understand that mistakes can happen. I stayed as calm and sweet as possible because the older I get, the more I realize that people - even those who have made your life a nightmare - are better help to you if you make them your friend. There are enough people willing to yell and scream and I really don't want to be one of them.

Now, the reason I had such a big reaction to this mix up is that there is a totally diverse opinion between Onco Man and the Pancreas Pooh Bah - one still thinks it is lung cancer in the state of metastasis and the other is totally convinced there is nothing new in the lung and that the pancreas mass is a pancreatic cancer not related to the lung and that it is in a very early stage, miraculous in being found so soon and easily removed along with the spleen and surrounding lymph nodes. These two will talk among themselves. I have a great deal of respect for both of them so I will wait and see what happens next. However, the pathology slides are the key!

I am too keyed up (no pun intended) to continue for today.

Believe! Pray!

As always, love from me to you!