Today was our almost two week post operative visit with the surgeon at MSKCC. This time we only had to venture to Basking Ridge, NJ and not wonderful NYC.
Besides checking on Sue’s healing, which by the way is doing very well, we were also to learn the results of the pathology of the lumpectomy. The purpose of the lumpectomy is to remove the tumor and enough tissue around it so that they have what is called clear margins. Clear margins are enough tissue surrounding the cancerous tumor that indicates to the surgeon they “got all of it”.
Clear Butterfly
The results: CLEAR is a bit of an understatement as NO CANCEROUS CELLS AT ALL were found in any of the tissue removed. My first question of course was “Did you remove the right area?”. After giving me a look you would expect, she assured us she did. Obviously very good news.
Future:
Four (4) more weeks of healing and then seven (7) weeks of radiation therapy. Don’t know much of the details yet about radiation, the surgeon told Sue to be prepared to come home afterward and sleep as fatigue is the most common side effect.
So I owe all you good people a wrap-up of the events of the past week and where we need to go. I’ll get a bit more verbose in this posting than those of this past week as I have a bit more energy and a real keyboard and screen to work with.
Tuesday February 5th was a preoperative testing day, the day started at 9:15AM and ended just after 4:00PM
Faith made her presence known and kept Sue company during preoperative testing.
EKG, Blood work, Chest X-Ray and exam with a nurse practitioner
Breast radiology-seed localization – Simply put they use a radioactive seed that the surgeon can then detect at the time of surgery with a special instrument to ensure they are removing the area of interest based on previous imaging of the cancer.
Nuclear medicine-nuclear mapping – After injection with a radioactive dye they map out the sentinel node and lymphatic system from the breast outwards.
Wednesday February 6th was surgery day. We were first cast (approximately 7:30AM) and told to report to MSKCC at 5:45AM. We were staying only a few blocks away and a quick 5 minute cab ride got us there by 5:35 (before staff arrived). We were not the first in line waiting though (second).
Everything went rather smooth, checking in, prepping for surgery. The hardest part was when they tried, unsuccessfully, to start an IV. Sue’s veins in her arms are very sore and scarred from the chemotherapy drugs that went through them. After two attempts the nurses stopped and deferred to anesthesia who were able to get it first shot in the OR.
We warned them that Sue was not very tolerant to any opioid pain killers, not allergic, but not a friend either. After each of her three C-Sections they injected a drug called duramorph a long lasting morphine pain killer. It lasts about 24 hours and basically caused Sue to vomit for the 24 hours after the c-section no matter what type of anti-emetic medications she was given. Makes for some lovely after birth stories for me and the kids.
They did not use any opioids during the entire procedure and I’m happy to report Sue kept everything where it belonged.
Before passing out she also informed the surgeon that if they went longer than expected to please let me know because I would “panic” if it went too long without news. So as I sat in the waiting room, they called other families up to the concierge desk to get updates on their family members and be brought back to recovery. At the two hour mark (about an hour plus beyond what they predicted) the surgeon still in full scrubs, booties, hat and mask comes out to speak with me. No one else so far has received this treatment so I’m ready for the “here we go again”. She apologized for taking so long and said they were done about 20 minutes after starting. They were waiting on the frozen section biopsies of the sentinal lymph nodes they removed. They had removed three lymph nodes and wanted to make sure all three moving away from the tumor site were all cancer free. They were, it just takes 20-30 minutes to complete the examination. I was able to see Sue in recovery about 30 minutes later.
When I went back into recovery she was just awakening from the anesthesia and being the typical “good nurse patient”. One complaint we do have about MSKCC is we did get the feeling of being rushed out of the same day floor after the procedure. Sue was barely awake when they were giving her instructions and her prescriptions to go home with (a nice service). When we were finally ready to leave they asked if we needed a wheelchair or would be walking out. Based on her inability to stand on her own yet (drug effect) we opted for the wheelchair. I got her in it and pushed her out to the lobby asking directions along the way. No help in the lobby either, just left the wheelchair there and told the unresponsive security folks that we were done with it. Another quick cab ride on the upper east side at noon (helped wake Sue up some more) and we were back at the hotel. Sue slept for the rest of the afternoon.
Pain has been tolerable, initially some low dose hydrocodone and advil along with ice took care of it. Now just advil and ice.
What’s Next
We have a followup appointment with the surgeon Dr. Deborah Capko on February 18th. She will have the final pathology reports by then and we should know if all of the margins are clear. If so the surgery was a success. If not Sue will need to heal and then undergo a full mastectomy. The chance of failure (unclear margins) is about 25% so the odds should be in our favor.
Once she is fully healed from the lumpectomy surgery Sue will start a seven (7) week course of radiation therapy. Following that, the next five years will be very diligent follow up and checking for any metastatic disease or local recurrence.
News
Today February 11th 2013 Bob’s Long Valley Pizza, Deli & Bagels will be holding a fundraiser for Sue and the income she will loose while recovering from surgery and radiation. Please stop by and support this local merchant for the West Morris Central School District.
Some have commented here and sent us e-mails about donations. If you want you can send anything you wish into the school. You can also use the page I had setup for Faith on her blog http://www.faithsfolly.com/donate
I just spoke with the surgeon. Surgery went well no complications or surprises. They took three lymph nodes and did immediate frozen section pathology on them. They were all clean.
I should be able to get into recovery in about 45 minutes to see her.
Good evening everyone. A quick update as I am on the iPad and need a real keyboard.
All pre operative testing went well today. An interesting experience hopping from building to building and the upper east side certainly isn’t Washington heights. I would still pick country livin over the city any day.
Sue is first case tomorrow, approximately 7:30am, we need to report to the hospital at 5:45am. Good thing we are only a few blocks away.
I’d like to update you on surgery plans and a few other matters.
Preoperative testing will be on February 5th and Surgery on the morning of the 6th. Sue and I will be staying in the city at a hotel near the hospital since commuting into the city each day is not an option. Family will be at home with the kids. Two days and surgery seems like a walk in the park at this point in our lives but I will still be much more at ease when it is over and we are home. I will keep you updated each day as I can.
There are two additional stories about the “sick bank” effort at Susan’s school. While most comments are supportive some have vitriol and claims facts that are not accurate.
I would like to thank all of those from the community and staff at the school who have helped our family over the past year. All of your prayers, well wishes and help has been truly appreciated by our whole family. Teachers & Staff have given money, cooked meals and offered any help they could. Without her colleagues an almost impossible situation would have been all the more difficult to bear.
Many have asked about or assumed facts that were not in the story so I would like to clear up some assumptions so you may review and revise your remarks.
THE FACTS
My wife Susan is 1 of 2 nurses at West Morris Central High School, she has been a registered nurse since 1989. She is my wife of 21 years and mother of our four children.
Susan has been the grateful beneficiary of employment and it’s benefits at West Morris Central High School since 2008.
Our family has and will continue to have health insurance coverage through her job.
NJ Short Term Disability is NOT available to public school employees
NJEA offers a Short Term/Long Term disability plan to employees. The open enrollment period is very variable “Open Enrollment opportunities generally occur only once every three years” This year is the first opportunity we have had to purchase. The last period was before her hire date.
All disability plans have a waiting period and require complete/substantial disability before eligibility and use of all sick and personal time first. She would not qualify for disability because of the intermittent nature of chemotherapy.
My wife did not ask for the Sick Bank, it was asked for by her colleagues. The school district had “banked” days for other employees that encountered catastrophic health events in the past with district support.
Some have suggested that she simply did not prepare or wishes something for nothing:
Since the beginning of school, Susan has completed 6 cycles (18 weeks total) of TAC chemotherapy, she has taken a total of 21 days off since the beginning of the school year.
In March of 2012 our 8 year old daughter was hospitalized for 70 days in the PICU of the Children’s Hospital of New York until her death on May 20, 2012. During that time both my wife and I were with her, someone was at her side 24/7 until and including her death. Faith’s Story
Susan used all unused sick, personal and NJ Family Leave during that time along with unpaid leave.
After our daughter’s funeral and 5 days bereavement leave my wife returned to her job caring for your children on May 29, 2012 and completed the school year.
Two months after she received a diagnosis of advanced stage breast cancer.
If anyone is prepared for two such catastrophic events in their lifetime let alone both in a 6 month period God bless you.
I have not commented on any of the stories on the Patch. I am not a member of your community nor a taxpayer in your district. I believe it should only reflect the beliefs and opinions of the people who live there. If you would like more information or to discuss this further feel free to contact me. My email address is joe@moorhome.com.
Sue completed her 6th cycle of 6 on January 4th 2013. She is happy to be done with it. The last two cycles were the worst taking the most to tolerate and sucking out any energy she had left afterward. She went through what’s known as TAC chemotherapy that was given every 3 weeks. Her oncologist calls it “Kitchen Sink Chemotherapy” some of the strongest nastiest stuff. So was it all worth it? Let’s look at the pictures.
BEFORE
Mammography before starting Chemotherapy
All the white area in the green circle is the cancerous tumor.
AFTER
Mammography after Chemotherapy
Where did it go? What looks like a ribbon is in fact a surgical clip shaped like a ribbon that marks the spot of the tumor that was biopsied when Sue was diagnosed (click on the picture for a better view).
On January 21 we went to Memorial Sloan Kettering Cancer Center (MSKCC) in Basking Ridge, NJ to get a second surgical opinion on what are next step will be. Our first opinion was that now a lumpectomy was a viable option. We are naturally suspicious of the medical field these days and wanted confirmation. The surgeon at MSKCC wanted some more information before she made a decision. While we were there Sue was able to get a Breast MRI which is much more sensitive and can detect cancers that mammo or ultrasound do not. Its use is mostly in high risk patients. It is also nice to know we were getting the best idea of what we faced before going in surgically. They also wished to redo the mammo on the left breast (the one without a tumor) because they were not satisfied with the images we had provided.
The results. The left breast is fine, the mammo was clear. We did not immediately get the other result. Well at least until we got home and while eating dinner got a call from the surgeon. She was happy to report that both studies could not identify ANY CANCER growth whatsoever.
Great, lets stop now that was enough fun for a lifetime… Nope. Sue will still need to have a lumpectomy and the tissue must be examined microscopically by a pathologist to ensure no cancer cells survived. The endgame here is not only to prevent localized regrowth but to prevent catastrophic metastatic cancer from occurring.
The Plan
The lumpectomy will be done in a two step procedure each are same-day but will be done on consecutive days. The first is lymph node testing and excision, then the next day is the lumpectomy. I really don’t understand the full detail yet but will soon enough. We have elected to have the work done in the city at MSKCC Main campus. They have all the people, equipment, experience and laboratories they need right there on site. A second to surgical skill will be the pathological examination of the tissue removed to ensure the surgeons margins are clear. Getting a CLEAR with be the measure of success for the procedure. Reconstruction, etc will be addressed after Sue has had healing time and radiation therapy. There is plenty of time for cosmetic touch up.
The tentative date is Tuesday Feb 5 and Wednesday Feb 6. We will be getting a hotel room in the city as driving in and out to the east side two days in a row (especially post-op) is just insane. We will have family or friends stay at the house with the kids those two nights. Recovery should only be a few weeks which is a good thing as Sue has been using unpaid FMLA since the end of December as the “sick bank” option never materialized and we exhausted all of the paid FMLA with Faith last year.
I will be updating this blog much more often now as more information becomes available and dates and times approach.
Thank you all for you support and prayers and to our little angel who has been busy.
I’ve been a bad blogger not keeping this up to date, sorry, we have been more busy and tired than we expected.
Sue went to see the surgeon tonight, the same one we initially saw who diagnosed her. When she was examining her, the surgeon was unable to feel the original lump. She then tried to visualize it with ultrasound and was still unable to see it. It would seem that the chemotherapy so far has shrunk the tumor/disease down so much it looks like now Sue will only need a lumpectomy followed by radiation.
It was very good news, Sue and I were just there staring at the doctor, who was like “This is good news, you should be happy”. About 20% of women will convert while on chemo to a tumor small enough for a lumpectomy after presenting with a much larger one to begin with. Sue’s was anywhere from 5-7 cm in size to begin with. We told her we are not accustomed to being in the “good” 20% of the odds and we would remain cautiously optimistic.
There are two more cycles of chemotherapy Dec 14th and Jan 4th, she can have surgery (lumpectomy) about 5 weeks after her last chemotherapy cycle. After surgery she will need 7 weeks of radiation (5 times a week).
More to be hopeful and grateful for. It would seem as if our angel has been busy.
Sue’s first cycle of chemotherapy is done. It was on Friday 9/21, started at 9:00AM and ended a little after 3:00PM. Yup it’s scheduled to be 6 hours long. Why so long? Here is the series of medications she received:
Normal saline ran all day. We are told she needs to keep hydrated to keep the toxins flushing.
Two antiemetic drugs. They are tasked with keeping the nausea and vomiting at bay.
The first chemotherapy drug was Adriamycin. An IV fluid that is actually red (scary from the start) it turns your urine red (quite quickly) and must be monitored by the IV nurse to make sure it is only going into your vein. It is very caustic and can cause serious tissue damage if it infiltrates your skin. The IV nurse actually sits there monitoring it and occasionally drawing back on the IV to make sure blood returns in the tube which is a positive indication it’s still in the vein.
The next chemotherapy drug was the cyclophosphamide. No special precautions except to run it slowly in steps to make sure there are no allergic reactions.
The last chemotherapy drug was Taxotere. This is another one that must be infused slowly (it took about two hours) and can also cause anaphylaxis so it’s started real slow and increased as the cycles progress.
Finally she had to wait for the liter (1000cc) of fluid that started at 9:00AM to finish
Almost 24 hours later she is doing fine. No vomiting, no appetite either. The biggest complaint right now is that her Diet Coke doesn’t taste the same. Dog tired would be a good estimate on how she is feeling.
Today we took a trip into the city to get a second opinion from the professionals at Memorial Sloane Kettering Cancer Center (MSKCC). Living in the NYC Metro area and being prepared with great health insurance gives us the option that would be stupid to pass up. We want to review all our options and explore all alternatives.
Our day was not typical (imagine that). We departed the house at 5:30AM for an 8:00AM check-in time, about 2 hours later and 3 blocks away from MSKCC Sue’s cell phone rings. It’s MSKCC informing us that her doctor is still in Montreal. Her flight from the night before was canceled because of all the bad weather on the east coast, they wanted to reschedule. Sue’s red came out with a too bad we are here and you need to fix the situation. Surprise, Sue got her way.
We ended up seeing quite a few docs today and took care of everything in one visit.
Medical Oncologist – Reviewed everything with us, no surprises.
Hematologist – Because of some limited family history of blood clots and Faith’s troubles a review was in order. In general just having cancer increases your risk of blood clots and chemotherapy does also. After review and the fact that Faith had no genetic markers for clotting or bleeding disorders, hemo was also confident that Sue would not have problems nor need any additional precautions.
EKG – Baseline before chemotherapy, in addition to an electrocardiogram we had done previously.
Flu Shot – Offered and accepted.
Baseline blood work that’s standard practice before starting chemotherapy.
Surgery – MSKCC has some of the best cancer surgeons and reconstructive surgeons in the country. We met to discuss surgical options and establish a relationship to understand what the next steps will be after her pre-surgical (Neoadjuvant) chemotherapy. We are thinking towards during the surgery at MSKCC because of all the expertise in all departments (Surgery, Pathology & Reconstruction) available in one stop.
Overall it was a very nice place. Not your typical NYC hospital experience if you’ve been through that. Still too busy and chaotic at times to be a good place to go to for chemotherapy and radiation on a regular basis. Since the experts agree we are going to do all therapies close to home for Sue’s comfort and convenience.
