MOM!

My Mom arrives tomorrow afternoon for a visit and I cannot wait!   Craig will be out of town for most of the next 10 days (2 separate trips) so it will be great to have Mom here to help with the kids.  I have a nasty cold right now that pretty much HAS to be gone by the weekend to keep chemo on schedule so a little Mom TLC will do me wonders right now.  I went to bed at 6:30pm last night, convinced I was getting the flu but I feel WAY better this morning.  Not back to normal but I don't have a fever or body aches anymore.   I guess the lack of sleep and eating and overall stress caught up with me!

I met with the social worker at the hospital on Monday and I really liked her.   It was nice to talk to someone who is not directly involved in my life about what I am feeling right now.   I will continue to meet with her over the course of the next few months.

Tomorrow, I go wig shopping (assuming I am healthy enough) and then on Friday I meet with the thoracic surgeon to talk about the port.  Fun times in cancer world!

Nesting

I feel like I am nesting right now like a woman who is 9 months pregnant...  I have organized the pantry.  Bought enough food for us to withstand about 3 months post-apocalypse.  Put out all the hats, gloves and scarves for winter, while putting away all our summer stuff.   For anyone that knows me well, I thrive when things are organized.  ;)    All this planning is keeping my mind off other stuff so that is definitely a good thing.  17 more days until we get going with the healing energy of chemo.  (I am doing my best to put a positive spin on it.)

This chemo thing is getting real

I finally heard back from Dana-Farber in Milford today (after calling yesterday to find out when they were going to call me to schedule everything).  The oncologist that the Boston doctors referred me to (Dr. Sinclair) left on a 2 week vacation yesterday.  According to the new patient coordinator, Dr. Sinclair would not be able to see me until the week of Thanksgiving.  This obviously was completely unacceptable so I called Dr. Goel (Dr. Winer's fellow) for help.   He actually answered the phone (it was his cell).  I explained the situation and he told me to give him 30-45 minutes to get things sorted out.  

About 15 minutes later my phone rang and it was Dr. Goel.  He had spoken directly with Dr. Sinclair who told him she could definitely see me before Thanksgiving and that I could start chemo the week of November 10.   I actually want to start the next week after that so I have treatments over a week before (rather than 2-3 days before) Thanksgiving and Christmas.  Dr. Goel told me that Milford would call me back soon to get everything scheduled.

About 15 minutes after that, my phone rang again and it was the new patient coordinator.   After much back and forth, we settled on the following dates:

• Friday, November 7 - consultation with a thoracic surgeon about installing a port (**See below).  Actual port installation would be the week of November 10.
• Wednesday, November 12 - Chemo "orientation" with Mary Beth, a chemo nurse
• Tuesday, November 18 - The first chemo session, along with my first appointment with Dr. Sinclair.

I am a little nervous about not meeting Dr. Sinclair until the first day of chemo but this is the way it has to be given her vacation and my desire to get going. She looks super nice based on her picture on the DF website.  ;)  (She also looks super young.  It makes me feel old to have doctors that are way younger than me...)

(Apologies to my friend Dennie for spending much of our walk this morning on the phone with various doctors and Craig.   Our walk did not go as expected but she was a good sport about it!)

After getting back from running some errands, I made a bunch of other calls:

• Moved my December dentist appointment to next week since you can't have your teeth cleaned during chemo, as lots of bacteria are brought out by the cleaning
• Found out from our insurance carrier that I need a prescription in order for insurance to pay for a wig but that I can go anywhere for the wig
• Got Dr. Goel to write me a prescription for the wig since I want to get that done before chemo starts and I won't see Dr. Sinclair to get it from her
• Made an appointment at a salon in Boston for the initial wig consultation, which will be next Thursday.   I burst into tears when the woman asked me (in a very sensitive way) why I needed the wig.   Thanks to Elizabeth to coming with me.
• Left a message for the oncology social worker at Dana-Farber in Milford to see if I can set up a time to talk to her.  I am in need of some help right now to process all this crap. 

After all that, I got the kids off the bus and ran them around to soccer and dance.  Just another day in the life of a suburban mom.   I wish...   The reality of chemo is starting to hit me and it literally takes my breath away.  I know so many people who have done this and all of them made it through.  I know I will too but it scares the crap out of me.   And the hair loss...   I have this really thick hair and I will be sad to see it go but hopefully it will eventually come back.  But if it all comes back grey, I will be pretty pissed.  (Craig, on the other hand, will laugh at me since I have been making fun of his every growing white hair for YEARS!)   I know I can do this.  The unknown is just a bit overwhelming now.

**Implantable ports or port-a-cath. A catheter connected to a port is surgically inserted (tunneled) under the skin of the chest, or sometimes the upper arm, by a surgeon or radiologist. You will receive either local anesthesia or be consciously sedated. You may be able to see and/or feel a small bump in your chest or arm, but you won’t see the tip of the catheter outside the body. Before each “access” or needle insertion, the skin over the port may be numbed using a cream. When treatment is given, the skin is cleansed and a special needle is inserted through the skin into the rubber seal. This allows blood to be drawn or treatment to be given into the catheter that is connected to the port.

Chemo is on

I spoke with Dr. Winer's fellow, Dr. Goel, at Dana-Farber today and they are definitely recommending chemo.  They'll still discuss my case on Tuesday but we will move forward with plans to get it started.    Dr. Goel was emailing the medical oncologist (Dr. Sinclair) at the Milford location (15 minutes from my house) so that her office could call me to schedule appointments.   I am not sure I will hear back today. I'll call there on Monday if I don't hear from them.   Now, I just want to get a start date so we can make plans for the next few months.   This totally sucks but I know I can do it and I am SO lucky to have such a great support/prayer network near and far!

Discussions about chemo

Newton-Wellesley was able to squeeze me in yesterday, so I met with Dr. Block.  Unfortunately, Craig was not able to come to the appointment with me.  This was fine for the appointment itself, but I am finding the 45 minute ride there is a little too long for me to be alone with my thoughts....

Dr. Block was very apologetic about the mix-up the day before.  She too thought we had an appointment and never would have thought that the September appointment replaced this October one.  I appreciated the apology.  She had connected with Dr. Winer via email and learned that Dana-Farber had finished up their own pathology report on the tumor.  It was in complete agreement with Newton-Wellesley so we are looking at a recurrence of my old cancer and not a new cancer.  I am about 99% sure at this point that I will be having chemo as I cannot imagine another doctor at Dana-Farber will come up with a compelling reason not to give me chemo if Dr. Winer can't...   It sounds to me like they think potentially that there is something other than estrogen fueling the tumors which is why the tamoxifen did not work.  Unfortunately, they don't know what did cause it to come back. I plan to explore that more with Dr. Winer.

Dr. Block took me though the chemo protocol - 4 rounds of Adriamycin and Cytoxan (AC) and 4 every other week or 12 weekly rounds of Taxol (T).  This is a standard breast cancer protocol.  The AC part will be the tougher one with fatigue, nausea (although they have tons of meds for it), mouth sores and hair loss.  I will lose my hair in about 2.5 weeks after starting.  T will be better. There is the potential for numbness and tingling in my extremities, which I know has become permanent for some people so hopefully I avoid that.  I likely will need a port-a-cath, which is implanted just below the skin between my breast and my shoulder to allow easy access to my veins, rather than sticking my arm each time. I am really not excited about that.  I'll need the chemo nurses to assess my veins to decide if I need one but Dr. Block said they are pretty routine these days. 

After Dr. Block took me through all the chemo information, I told her I was considering doing my chemo at Dana-Farber in Milford due to its proximity to home.  I REALLY like Dr. Block.  She is incredibly smart and great at explaining everything to me so it was really hard for me to essentially "break up" with her but she understood.  She did tell me that not all the doctors in Milford have always been "Dana-Farber doctors".  Some just moved over from the Milford hospital when Dana-Farber opened the location.  I told her Dr. Winer had a doctor for me who spends a day a week in Boston, so she seemed happy to know I would be in excellent hands. 

So, now we wait for Dana-Farber to come forth with their final recommendation and get the chemo planning going.  I hope to start the first or second week of November.  The sooner I start, the sooner I am done!

FRUSTRATION!

In my calendar for today was my 6 month check up with my oncologist at Newton Wellesley.  Obviously the whole "6 month checkup" is moot, but based on a discussion with Dr. Block a few weeks ago, we decided to keep the appointment to talk about where we are from a treatment perspective.  Dr. Block was on vacation October 1-20.  I was eager to talk to her about our meeting with Dana-Farber last week to see if Newton Wellesley's position on chemo had changed.

Last night at about 10pm, I realized that I had not gotten a call confirming the appointment and it was not showing up in the hospital's Patient Gateway.    I decided to just call and confirm before we made the 40 minute drive in the rain and it is a good thing I did.   When they squeezed me in back in September when I was first diagnosed, Dr. Block's office cancelled the appointment for today but no one told me.   I am NOT HAPPY and neither is Craig, who stayed home from work to come with me.   This is the 3rd thing that office has done to annoy me in the last few weeks.  (The first 2 relate to taking DAYS to get back to me with answers to relatively simple questions.  In fact, one of those questions I called about last Thursday and I STILL don't have an answer.)

I am already doing radiation at Dana-Farber in Milford and have been thinking that it might make sense to do chemo there too (assuming I need it.)  It is 15 minutes away and it is Dana-freaking-Farber, the 4th best cancer hospital in the US according to US News & World Report.    Based on these latest developments at Newton Wellesley, it seems to make the most sense to change everything over.  I really like Dr. Block but I don't need frustration and admin annoyance right now.

Vent over...

On a positive note on Monday, I saw a nurse practitioner at the Breast Center at Newton Wellesley (that place seems to have its act together) and she says I am healing great from the surgery.

And the waiting continues...

I am not going to lie.  It is a little disconcerting to have a relatively well-known breast cancer doc open a conversation with you by saying, "I am not really sure what to do with you."   But that is where we are on the question of chemo.  I present an unusual case since the cancer "should not" have come back while I was on Tamoxifen.   Dr. Winer agreed that we did everything right the last time.  Even today, if my case from January 2011 presented itself, he would have suggested the same treatment (surgery and Tamoxifen, no chemo or radiation).   He is a doctor that, in patients with ER/PR+ and HER2- cancers, assumes no chemo.  There are NO statistics on cases like mine, so he can't tell me what my risk of recurrence is with and without the chemo.  He can only guess, but his gut is saying we will get enough incremental benefit for it to be the right move.   Craig and I obviously are pretty upset at this new development but we want to do what the doctor's recommend, since my risk of another recurrence is definitely higher than it was after the primary incidence in 2011.

So next steps are as follows:

• Dana Farber will obtain my pathology slides and perform their own analysis.  Dr. Winer does not think there will be any changes but he wants to confirm there is absolutely no breast tissue in the sample and no evidence of DCIS (non-invasive cancer).   If either are present, it would indicate this is a new primary cancer and not a recurrence.
• On Tuesday, October 28, all the doctors at Dana Farber will meet in their weekly "conference" and my case will be presented to see what others think about the chemo question.  (Dr. Winer is away next week and the pathology probably would not be done anyway.)

So we wait for probably 2 weeks for a final decision to be made.  If I were to have chemo, it would start ASAP and would be 8 cycles in total every 2 weeks - so 4 months overall.  I'd have a 2-4 week break and then start 6 weeks of radiation.  We'd be looking at a May end date.   Still hoping we won't have to do chemo, but trying to prepare myself for the worst case scenario.

After all that, I would go on the ovarian suppression shots and take an aromatase inhibitor for the foreseeable future!

I plan to drink a bunch of wine tonight!