Chicken or the egg?

What a whirlwind of a week. On Thursday, I went to go for a 2nd opinion consult with Dr. Eli Avisar at University of Miami/Sylvester cancer center, then headed straight to Margate (North Broward) to meet with Dr. Wayne Maxson, a reproductive endocrinologist. Yup, that’s right, I went to go speak to a fertility doctor. (More on that later). Friday, I had a follow up appointment with my oncologist, Dr. Patel, who gave me the results of the “tumor board” meeting.

Dr. Avisar
I was quite impressed how punctual the doctor was. The nurse, on the other hand, not so much. She literally kept the doctor waiting while she finished her work-up of me prior to meeting him. Abba and Yaniv had delivered all my pathology, ultrasound and MRI tests and results to Dr. Avisar the day before specifically because I knew I was in a rush to get to Dr. Maxson right after. Dr. Avisar walks in, introduces himself, and right away announces something along the lines of, “Well, after reviewing your charts, you don’t have cancer.” Wait, what?? He then clarifies that “Stage 0” is not really cancer, blah blah blah. As my parents and I are all sitting there dumbfounded, I say to him, “Um I have invasive AND DCIS, not just Stage 0.” This is when the other surgeon who was there observing tries to discreetly point out the 2nd half of my pathology report which CLEARLY states I have invasive. Not a good way to start off with me and my family, doctor.

Fortunately, he redeemed himself after his error, and putting aside his ego, we were really impressed with him. He recommended right away surgery first (remember, Dr. Patel was leaning towards chemo first), then chemo then radiation if needed. He also told me that UM has a research project for nipple preservation if I needed a double mastectomy. I hadn’t heard about this option before so I was overjoyed! Then he told me he has to find out if I qualify for the project. Boooooo. If my tumor is too large, they can’t keep the nipples.

In case any of you are wondering why this was such a breakthrough and good news for me, another alternative to nipple preservation is having a nipple tattooed onto my reconstructed breast. Yes, tattooed. Furthermore, no nipple = no sensation. I haven’t had time to digest this yet because, as you will see, there was several other major news I heard and frankly, there’s only so much my brain can handle.

He also said there’s another surgery called the TRAM (transverse rectus abdominis muscle) flap surgery. The TRAM flap procedure uses tissue and muscle from the tummy (the lower abdominal wall). The tissue from this area alone is often enough to shape the breast, and an implant may not be needed. The skin, fat, blood vessels, and at least one abdominal muscle are moved from the belly (abdomen) to the chest. The TRAM flap can decrease the strength in your belly, and may not be possible in women who have had abdominal tissue removed in previous surgeries. The procedure also results in a tightening of the lower belly, or a “tummy tuck.”

A “free” tummy tuck at the same time as new boobs? It’s like getting a whole new me! This surgery is sounding more and more tempting. A lot of you have asked what you can do to help…so here’s something: If any of you know anyone who knows a good breast surgeon, please ask them who they would recommend for a breast reconstruction surgeon. In other words, if the surgeon or his Wife needed a breast reconstruction, who would he/she use?? Also, if any of you have time to research breast reconstruction surgeons that can leave my nipples in and/or reconstruct my breasts so there’s still sensation, I would greatly appreciate it. I believe that whether the nipple stays in is contingent on how big the tumor is so I need to know what the maximum size the tumor can be for the nipples to stay. I will fly anywhere in the country if needed.

Dr. Maxson
I scrambled up to north Broward after meeting with Dr. Avisar and Nicole met me at the IVF (in vitro fertilization) offices. Dr. Sonnenblick had highly recommended Dr. Maxson and as always, she was right on the money. I really liked him.

This topic – and my decision - is sensitive and will remain mostly private between Jason and me, but the facts behind it are that I may go into early menopause because of the chemo and radiation so it has been suggested that I freeze/harvest my eggs and/or embryos before I begin chemo. This decision has become the most time sensitive one of all since a certain monthly friend is due any day now…

I will selectively be speaking about it but I ask that you respect our privacy on this issue. My parents have also been instructed to keep mum on the subject too.

Nicole deserves a special recognition here. She drove all the way from downtown Miami to north Broward and rescheduled her entire day (she’s an attorney, like me) in order to come sit with me and take notes and just be there for me. Every new doctor overwhelms me and every new doctor gives me way too much information for me to retain so it is SO helpful when I have one of my best friends sitting there taking notes and being the moral support I so desperately need at this time. Thank you to my “twin.” (For those of you who don’t know, Nicole and I not only share an amazing friendship that keeps blossoming, but also share the same birthdate – same date and year and even same hospital.)

I couldn't even go back to work after this back to back info overload. I was pretty upset as one can imagine. Who else gets to make a decision that could impact the rest of her life over a weekend?

Jason brought me home red roses that night. It's things like that which make my heart smile when everything else in my body feels broken.

Dr. Patel
After waiting an hour, yes an hour, to be seen by Dr. Patel (the oncologist), she advised us the consensus of the tumor board. Majority vote, which usually consists of 5 oncologists, 2 breast surgeons and a radiation oncologist, the consensus was that Memorial Voted for chemotherapy first. This differed from University of Miami's opinion. What to do? Well, after hearing the rationale for chemotherapy, I have decided it will be chemotherapy first, then surgery and then radiation, if needed.

I also tested positive for HER2, which means that I now have to take the Herceptin drug for the next 12 months. It's going to be a long year, but I fully intend on ending 2012 with a bang!

I also got the devastating news which I completely knew but hearing it made it real: the oncologist gave me an 100% chance I will lose my hair. I spoke to a very close family friend last night who is also a survivor and lost her hair – entirely – within TEN days from starting chemo. Yup, 10 days.

Finally, I got somewhat of a “plan”:
I start chemo on or around the 1st of October. I will receive it for 4 ½ months by IV every 3 weeks on Wednesdays.

On the 2nd day, Thursday, I then get a white blood cell booster, which from what I’ve heard will then wipe me out for the next 2 days…so I’ve given myself the weekend to recuperate. For all of you who know me well, you know how important my birthday month is to me – it will be the hardest month of all for me, knowing I will be in chemo during Rotembuary.

Did I mention that the oncologist advised me that a lot of women actually gain weight while on chemo?? Um, you would think that the nausea would make you NOT want to eat. Sigh. Fortunately, she said the actual drugs don’t make me gain weight, but that my taste buds may change and I will crave more fattening foods. If I don’t have the fattening foods, I won’t eat them. Lots of you have offered to bring me food during this time. I most graciously want to take all of you up on your offer, but please please please don’t bring or send me anything fattening. It will be too tempting.

I have registered for a really cool website called Lotsa Helping Hands. It is a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need. It’s an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis. I can also use it as a place to keep these “circles of community” informed with status updates, photo galleries, message boards, and more. I haven’t yet input my schedule but if you sign up, hopefully I can figure out a way to send out an email when I do. If not, good thing I have this blog. :-)


To start the registration process, click on the link below, and enter your email address under “Interested in becoming a member of this community?”

https://www.lotsahelpinghands.com/c/646358/
Let’s hope it works!

Then I get a double mastectomy. On Friday, my breast surgeon at Memorial advised my oncologist that my tumor is too big for a lumpectomy. Small breasts + big tumor = no breast left after a lumpectomy. That’s why I want the best for breast reconstruction.

Weight gain + hair loss + loss of boobs = one devastated person. I am still trying to keep a positive attitude and tell myself that I get to try out a new look if I want (ladies, remember Samantha’s pink wig on Sex and the City?), I get to choose my boobs, and I *may* get a tummy tuck, but all of this is a very high price to pay.

Finally, the jury is out on whether I then have to have radiation, which would be for another 6 ½ weeks after the double mastectomy.

Oh and since I’m HER2 positive, throughout all of this, as I previously mentioned, I need 12 months of Herceptin, which I believe is also transmitted intravenously.

So…I *think* that’s the schedule. Before I start chemo, I also need to have a port inserted into my chest. A port infusion uses an under-the-skin (subcutaneous) port that has been implanted by a surgeon. The port is located either in my arm or my chest, and is connected by a soft, slim catheter tube that goes through my vein all the way to my heart. This catheter protects my vein during treatment. The port is an entry point that my infusion nurse can find each time I come for a treatment, and it can be used for a blood draw, as well as infusion of drugs. My chemotherapy nurse will use a special type of needle to access my port, and won't have to hunt for a good vein to use (even though I have GREAT veins, imagine how much they will be abused throughout all this). The needle will be taped into place to prevent it moving around during my infusion.

I will also need to go in for a PET/CT scan, an echocardiogram, and “chemo training.”

There is SO much I want to do…I want to diet before chemo started, I want to catch up on Facebook gossip, I want to return phone calls, I want to be able to individually thank each and every one of you for being there for me…I want this to have never happened.

I will need all of your support, each one of you for a different reason. This is when friends, family, and others show their true colors, in times of crisis. I have never had a bigger crisis and I hope that NONE of you EVER have to experience the roller coaster of emotions I have and will continue to feel for what feels like a one year journey to hell. However, I recognize that there is a light at the end of the tunnel, I am strong and I will be a survivor throughout all of this.

One day at a time.