I cannot tell you how wonderful it has been to get emails, calls, cards, responses on Facebook, RT’s on Twitter- every kind of communication possible today! Going through this hellish process is so difficult but going through it alone would be much worse. Now I feel the love and support of so many friends, near and far. Friends from my life now and friends from high school, friends from real life and from cyber space! All the comments and support are valuable and help me get through the weeks and days. The comments on posts, the words on responses on Facebook all come through on my e-mail so I get to read them everyday. I am grateful for all of them and feel so thankful for the caring community of friends I have made in my life.
Tomorrow I meet Dr. James Kolker, Radiation Oncology at PA Hospital, which I will need after I heal from the surgery. I need a lot more information about that whole process. He will be communicating a lot to me!! Norman is going with me with pad and pen in hand to take notes. Of course, the next day he is getting a bone scan for his own problem. My advice to you- stay young!! ( if it’s not too late)
I am walking around and I am okay but I am not fully functional, really. I misplace things, I get lost going places I know how to get to, I am disoriented and working on partial cylinders, like an engine with not enough fuel or the wrong fuel, or something malfunctioning. I can go along okay for a while and seem fine, All of a sudden, I realize I do not know what is going on, or where I am… if I am in the car, I am driving on automatic and might need 30 seconds to figure out where I am going or where I am. If I am going up the steps, I forget why. These things had happened before; now they are happening more often. You think something is on my mind???
The doctor herself called me to tell me that the tests results are normal and everything looks okay for the surgery on Wednesday. We are planning for a lumpectomy which will then require radiation therapy as a follow up procedure for sure. Chemotherapy is a maybe depending on the pathology report of the actual tumor and lymph nodes. Someone from the office will call on Tuesday to tell me what time to come in on Wednesday morning. It is an out-patient procedure!! Next, I guess they will give you a kit with instructions on how to give yourself an operation and what channel on TV to turn to to watch the doctor tell you how to do it!
I am really feeling supported and happy from the feedback from friends reading the blog and the e-newsletter! Thanks to everyone who responded. It means a lot and helps my mental health which I believe helps my physical health since body, mind and spirit are all related.
July 3 I come back to the hospital for the MRI. I could not get it yesterday since it involves a shot as well and you cannot get it the same day as a bone scan. What a learning curve I am on! I am only having one test today and then am going back to the shore for Fourth of July and to end our two week family vacation on Long Beach Island.
I have had an MRI before on my knee and other body parts where I have been on my back. This time, I am om my stomach so my breasts hang into the machine wells were the pictures are being taken. The noise is amazingly loud! The procedure only takes 20 minutes in various stages and I have earphones with music which gets drown out by the machine, but I don’t care.
I am thinking about my grandmother Anna Manin (z”l) who died in 1951 when I was 8 years of of breast cancer which had spread to her stomach. She was 58 years old. Would she have fared better today with all the benefits of the technology I have access to? When was her cancer detected? What treatments were available? What a world of difference has been discovered in 60 plus years. My experience will be so different from hers. First, I can talk about it, mention the C word! I even blog about it! Cancer comes out of the closet like TB did a century ago. and scientifically, they have forged ahead.
So all I hope is that the results of the tests are good and things go well.
July 2 I am in from the shore to get the bone scan and other tests. At 9: 45 AM I receive the dye shot and the technician tells me to return for the actual bone scan at 12:45 PM. Now I go tests loos tests. she has to use my other arm since I already have been stuck in my right arm! I have bandages on both arms when I leave to go get a chest x-ray. Befor the procedure, they ask me to fill out some forms. In the medical history part, this is the first time, I have to check Cancer and I start to cry. I haven’t thought of myself as a person with cancer. Now I will always have a history of cancer! Along with arthritis and GIRD!! the stakes have certainly risen.
After the x-ray, I go for an EKG. I assume all these tests are to insure that nothing else is wrong with me before surgery. I wait another hour and a half to get the bone scan which is a freaky test, looking for trouble in my bones!
I go home praying they find nothing.
Not knowing is worse than knowing, I think. I am going tomorrow and the next day to get pre-operation testing- a bone scan, chest x-ray, blood work and an MRI. I came back from our family vacation at the shore by myself to get it done. I am going alone, no need to an interpreter since no one will be giving me results. The results are for the benefit of the surgeon- to see if the ultrasound was accurate, to check if the cancer has spread I imagine. The concept is terrifying. The fact that there are cancer cells growing in my body at this very time is something that I have a very hard time with. I can rationalize that, because of my age, they grow slow, that the tumor is only a centimeter, but I REALLY do not like it in my body and want it out!!
Another thing I am concerned about is what if they do not get it all. Every person I know, living or dead, who had a cancer operation, was told that they got it all. Of course they always try to get it all. but cancer cells must be tricky little bastards- and evasive as hell. Because they pop up later in other organs and places in the body to create havoc.
So now, I am playing what if? What if this and what if that? With what I don’t know and then when I do know I do not think I will ever really know… or at least trust that I know for a long time. 5 years or 10 years… maybe
After a very long 3 weeks, I finally met Dahlia Sataloff and was duly impressed. I had heard she was very competent, knowledgeable, but not warm and fuzzy. I heard she was attractive and a great dresser. I went in with a lot of expectations.
First impression: She walked the patient before me and her family out of her office into the waiting room. I thought that was very warm, if not fuzzy. she then went back into her office for a few minutes and personally came out with a folder to get me. I think that is very warm and welcoming. I never went to a doctor who came into the waiting room to get me. A nurse or secretary always gets the patient to take you back. That is a very personal and friendly gesture. She is warm and fuzzy enough for me. She was caring and encouraging as well as efficient and smart.
She was wearing a great outfit and very stylish high heeled shoes. How does she walk in those shoes all day?? She definitely cares about fashion and is well put together!
She is very efficient and explains everything carefully. She was very optimistic about my case, barring any surprises in further testing. I have to get a bone scan, chest x-ray, MRI and blood work which someone in her office helped me schedule for July 2 and 3. I set the date for surgery for July 11. She made recommendations for a medical oncologist and an oncological radiologist. It is a lot to take in. I called the nurse navigator at Pennsylvania Hospital. They have many services to help you there. I think I will be using them as I get further into the process. I can see it becoming more and more overwhelming. Now I am still in denial. It is getting harder and harder to stay in denial. Reality seeps in more and more. Tests, doctors appointments, surgery… real life!! Cancer here you are front and center!!
This morning I got up at 4 AM which is the witching hour that lets me know I am anxious about something. When I wake up anytime between 3 and 5 AM, something is on my mind. So, there is no denying I am worried about breast cancer and my appointment on Friday with the breast surgeon. I have been keeping it out of my mind with all kinds of tactics- excessive TV (more later), denial, finishing up projects, art work, cleaning out drawers, paying bills, etc. but now nothing is helping. The appointment is tomorrow!!!
In the past almost 3 weeks, I have watched 4 seasons of “Nurse Jackie” which is a fabulous show. I spend so much time at All Saints Hospital with those characters, I feel like I know them better than some of my friends. I like them better than some of my friends. I want to go out to lunch with Jackie and Eleanor!!
I have finished up my subscriptions at the Arden Theater, Walnut St Theater, Philadelphia Theater Company and the Wilma Theater so I saw 4 great plays. I made some good art which I really like which will be included in shows in the fall.
Timing is weird since we are scheduled to leave for our vacation Saturday night so I am cooking for that as well. Then we’ll be at the Jersey shore and will have to come back for an appointment at the Hospital at UPenn on Wednesday. Is sickness every convenient??
My mother did cryptograms everyday and so do my sisters. I try to do them everyday. I always do the crossword puzzles and work on the cryptograms but give up if they’re too hard. I do not have as much patience as i used to, especially lately. But I am a word person, rather than a number person. I have no interest at all in Suduko or Suduku. See, I am not even sure what the game is called.
Anyway, a few days ago I did the cryptogram and the answer was:
LIFE IS LIKE AN ONION. YOU PEEL IT OFF ONE LAYER AT TIME, AND SOMETIMES YOU WEEP.
– CARL SANDBURG
I have become very weepy. I go to a play and I cry at happy and sad parts. I saw “The Buddy Holly Story” and was a wreck at the end. Even though the writers brilliantly ended the play on a very joyful and rock and roll moment, I was sobbing to think this vibrant young boy was killed and died so young. No one else in the theater was crying.
As it is getting closer to my appointment with the surgeon, the reality of my situation is becoming real to me and I am afraid. What if something goes wrong? What if they find more than what shows on the mammogram? What if there are serious complications from surgery? What if? What if?
I realize today that I am getting by these last weeks only by denial. All my life I dreaded cancer, and most specifically breast cancer, and now with the diagnosis myself, I am pretty glib about it. I think it has not really become a reality for me. I am still in the twilight zone or La La Land of disbelief. The initial appointment with Dr. Dahlia Sataloff is this Friday when I will find out what specifics are in store for me and I can then know what I will have to do. I will feel much better then when I can plan my summer and know what to expect.
I went on the Susan G Komen for the Cure web site for information which I found very helpful as well as talking to other women who have been through this process themselves. I cannot wait to meet the doctors and get the real information on my specific case. The nurse navigator from HUP got me an earlier appointment (June 27) with Dr. Brian Czerniecki so I do not have to wait another 2 weeks.
I am wrapping up projects and details as we go down the shore and finish up odds and ends around the house so I can prepare for surgery.
Here I am, with breast cancer living life as if nothing is different when actually everything is different. Or really, everything could be different, who knows?? I want to know specifics but all I know are generalities. i have spoken to so many people, nice, generous people who have shared information and personal stories so that I feel informed, or more informed than before. But I realize now that I need to know my particular information and I won’t know that until I met with the doctors and get more information about my particular case. I will need an MRI and maybe a lymph node biopsy and whatever else the doctors order.
I have learned several things already:
1. Do not go to an appointment alone. Bring someone who will write things down or maybe even bring a tape recorder if the doctor says okay
2. Every case is different.
3. You have to be patient with the health care system.
4. Some people I know very well have had breast cancer and chose not to share it with me. Now they are willing to talk about it to help me through my ordeal. I really appreciate that they would do that for me. Some people are private and keep everything to themselves. Not me, as I had said before, I would discuss my appendix and feel this condition is the same. Whether I will get into specifics of what I chose to do in treatment or reconstruction, etc. is another story.
5. Time goes very slow when you are waiting for an appointment. it is only 5 days since I learned I have breast cancer and it feels like forever!!
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