Plan B

The Interlakes Oncology office manager contacted us to find out what happened yesterday.  There was concern that Dave was yelling at the doctor on the phone.  She wanted to find out what the disconnect was.  I told the story.  Today, Dave called her and told the story again.  It was resolved by switching me to a new oncologist in Brockport.  I have an appointment with her on Wednesday, March 1st.

Dave will be calling the lab in California this afternoon to make sure the rest of the tissue samples showed up.  They will perform the oncotype and mail us the results.

Dave rescheduled the appointment for Sloan Kettering. That will happen on March 9th.  I'm rearranging childcare and my sub for that date.

I called my doctor back to make sure they were able to rewrite and fax my back-to-work note.  They sent it yesterday.  I have asked the school to contact me when they receive it.  They have not.  Not sure what is up their sleeve this time.   I emailed the superintendent today with a new question:  If she considers working half days to be a restriction and is forcing me to come back full days - how does this work with chemo?  The doctor may write that I need half days the week after treatments.  I am assuming the school will force me to do full days if they are saying stamina and exhaustion are restrictions. I would love to think that they will provide an answer, but I have lost faith.

Until then, I cannot arrange my kids' busing and childcare because I do not have confirmation that the school will let me return to work.

Update:  The superintendent has approved my return on Monday.  She will alllow me to take half days due to chemo treatments - if needed.

FML :(

We were supposed to meet with the oncologist in Batavia today to get my oncotype test results on all 5 of my tumors.  Yeah, no.  She called this morning and relayed that the samples were never sent out (they have to go to a lab in California, thus the results taking 2 weeks) and that she had changed it so she was only having one tumor tested instead of all five. This is the test that will dictate the need for chemo.

We are in a serious time crunch on this.  Chemo is supposed to start on March 16th.  It has to start 8 weeks post-surgery.  Prior to chemo, I will need surgery to have a port placed in my chest.  I need to have my heart checked at the cardiologist.  I also wanted a second opinion from a larger cancer institution so that I know that chemo is the right thing to do.  Chemo is a lot to put myself through if there is little benefit - a huge time commitment and a lot of side effects.  Dave questions me with this:  If you waste over a year of your life doing chemo and the cancer returns......you've wasted a good year of your life.  If you don't do chemo and the cancer returns, you don't know if it's from not doing chemo and you haven't wasted a year of your life.  Which is worse?  I really don't want to be chemo sick at any point, and I continually worry about missing out on a year of the boys' lives.  And then that makes me think, what if my life ends when they are in 2nd grade.....I'm missing it all.  Morbid. Ugh.

Soooo, back to the oncologist in Batavia.  I got a voice message to call her this morning.  I immediately handed the phone over to Dave.  I knew they were calling because they didn't have the results. I can not take these calls. Within minutes, he was yelling at the doctor in frustration.  Brutal.  I hate that to get anything done, we have to check and check and check to make sure everyone is doing their JOB.

We are not sure why the doctor decided not to send all 5 tumors.  We have no idea why the testing wasn't started. Dave started calling around to the lab and insurance agency.  Turns out that our insurance DOES cover getting all 5 tumors tested!  And it didn't take him long to figure this out.  Why couldn't the doctor's office do this?

We were scheduled to be at Sloan Kettering for the 2nd opinion on Monday.  That had to be cancelled.  We also have to round up all the reports and biopsies and make sure that they get held.  Our flights were over $500 each.  I had babysitting all set up for the kids.  The school put in for my sub.

Dave has been on the phone all day trying to make sure the California lab gets my samples TODAY.  One arrived.  Four more are being overnighted.  It takes 2 weeks to process. We rescheduled Sloan Kettering for March 9th.  I rescheduled child care.  Dave will reschedule the flights.  I will reschedule my sub.

In the meantime......because NOTHING can go well........I faxed my doctor note to my school on FEBRUARY 14th with doctor's recommendation that I start back the week of Feb 27th half days to build my stamina.  Then proceed onto full days. TODAY, over a week later,  I finally get a response saying that the superintendent will not let me come back half days.  She considers this a restriction and I am not allowed back in school with a restriction.  She is not going to allow me to gradually re-build my stamina and would prefer that I come back full days cold turkey.  I have had to call the doctor to get them to rewrite and fax over a note saying I can go return full days on the 27th. This amazes me.  With all the people who have been there for me and helped me in so many ways, I cannot get an easy accommodation from the school to start with half days?  It's ridiculous, because if I'm tired, I can leave at mid-day and take a half a sick day......exactly what I would have just had set up.  SMH.  And, because this is what we have to do with everything lately, I will have to call the doctor back and make sure the fax was sent and contact the school to make sure it was received.   I'm beat down today.  With all of it.

Feeling great!

Even though I have been feeling better with each day, this is the first day that I've woken up feeling REALLY great!  I have energy and my pain level is almost zero!!  I've been happily doing little chores around the house that haven't been getting done, because, you know - men.  Got the sheets changed, new towels in all the bathrooms, cleaned out the inside of the fridge, etc.

Today, I'm getting my last "delivered" meal and I really cannot express my gratitude to all who provided for us.  It has been truly a lifesaver.  Dave's company is going to provide some "Blue Apron" to us for a bit and that will be a great way to wean up to planning, shopping, and preparing our own meals again.  :)

On February 22nd, we have an appointment in Batavia with our oncologist (Dr. Kamath) to get the results of the oncotype results of each of the tumors.  That should give us some insight on the need for chemo.

Then, on February 27th, we have an appointment at Sloan Kettering in NYC with an oncologist.  The contact at Dana Farber didn't work out.  This will be our 2nd opinion on whether I should go through chemo.  I am hoping beyond hope that I do not have to go through this, but if it is so, I will get it done.  But, for now, I'm pushing that thought deep, deep down and enjoying the fact that today, I feel amazing!!!  :D

Back to work

I had follow-up appointments with Dr. Hetland and Dr. Vega this week.  Here's the scoops on both:

Dr. Hetland -

• Said I did not have lymph node dissection in my arm, so there are really no restrictions on me using my arm for fear of lymphedema
• Mentioned that there might be concern of tumors in my right breast since so many were found during surgery on the left breast  (I am choosing to NOT think about this at this point)
• Chemo and Tamoxifen would reduce tumors in other parts of my body
• Next appointment in 6 months unless I need surgery for placing the chemo port in my chest

Dr. Vega -

• Said I am healing FAST and nicely, because I am so young (and it never gets old hearing that)
• Gave me permission to drive (Yay!!) and straighten my body (Yay!!) and lay flat in bed (Yay!!)
• Gave me permission to return to work Feb 27th, but only half days for a week while I build up my stamina again.  She says I am going to be exhausted with half days and I don't doubt it.  I'm exhausted just taking a shower!
• I need to wear sports bras for the next 2 months and no underwire for a full year
• Reconstructed breast needs time to "settle" and form a natural breast shape
• Up-coming surgeries to consider, in this order:  surgery to make both breasts the same shape and size, nipple reconstruction, tattoo work to make sure new nipple matches the other,  "tummy tuck" work on my sides so my new flat stomach doesn't end so abruptly
• I can resume some exercise if I take it easy, but should not be lifting very heavy things (such as our kids)
• Next appointment in 2 months

In the meantime, we are waiting for Dana Farber (cancer center in Boston) to call us for a 2nd opinion on the need for chemotherapy.  Also - and this is GOOD news - the oncologist, Dr. Kamath, was able to send ALL tumors in for the oncotype tests and it's all covered by insurance.  At least, that's what we think her voice message indicates. I am choosing to believe that.

It's sunny.....I can stretch......I can go back to work .........and I can drive!!!!!!!  :)

Oncotype testing

A quick lesson on oncotype testing:  This is a test that determines the benefit of using chemotherapy for estrogen receptor positive (ER-positive) breast cancers.  That is the type of cancer I have. The thing is that insurance covers the cost of having ONE tumor tested.  Most people do not have several tumors.  Mine have not been tested yet.  And we believe that the oncologist is covering her @ss by recommending chemo at this point.

So, we asked that all of my tumors get tested.  Wellllllll, since insurance covers ONE tumor.......all of the others would cost us $5000 EACH to get tested.  We decided to go ahead and get the largest tumor tested.  (The doctor is going to try to submit all under our insurance, but I'm not holding my breath).  If that tumor comes back and says chemo would help - okay, we have actual evidence for chemo. Then we can look at the statistics and make a decision.   If that tumor comes back and says chemo wouldn't help - we may have to pay out of pocket to have the others tested.

The kicker is that the test takes 2 weeks to get results. Chemo needs to start in less than 5 weeks.   One tumor is getting tested right now.  If the others need to be tested, we are going to be finding out results right as chemo is supposed to happen.  Tight timeline.  Especially since I would need to get the port placed in my chest and have an echo-cardiogram prior to chemo.  The chemo drug in my "cocktail" can do heart damage.

Back to waiting - results on first tumor are due February 22nd.

Head spinning from visit with Oncologist

We just got home from a 3 hour appointment with the oncologist.  We saw Dr. Kamath in Batavia and she was top-notch.  After talking to the breast surgeon, I really thought I was homefree on chemo and radiation.  I knew I'd be taking tamoxifen or something similiar for 10 years.  Chemo wasn't even tossed out as an idea in all the meetings we've had with surgeons.  I knew it was a 50/50 on needing radiation and I was hoping for not needing it.

I first met with the nurse to take my vitals.  She had me remove my shoes for height and weight.  I told her I am not allowed to straighten my body out yet due to the abdominal stitches.  I told her I'm 5'9" but she wouldn't take my word.  She tried several times to measure me and got me pegged at 5'5".  I was literally rolling my eyes at the stupidity of the whole thing.  OMG.

Then the physician's assistant came in to go over the pathology report and blurt out:  The recommendation is that you need chemo.  I was not prepared to hear that.  She acted very sad for me, like she just told me I was going to die.  I was desperately trying to distract my mind from tears. (Think of one thing you can see.  Think of one thing you can hear.  Think of one thing you can smell.....get grounded!). Dave started asking her questions but she was immediately in over her head.  She left to get the oncologist.

The oncologist was excellent.  She explained the pathology report.  She was able to answer all of Dave's questions.  The thing is that I have 5 tumors that were found to be cancerous, all growing independently of each other in all quadrants of my breast.  This is very rare.  Most people have ONE tumor.  There aren't even studies done on people with so many tumors.  They recommend chemo becasue if those 5 tumors could grow independently of each other in my breast, there is no evidence to suggest that it couldn't or isn't happening all throughout my body.  Chemo would treat all of me.  It would last 6 months.  I would lose my hair and all the other side effect horrors. I would have to have a port put in my chest.  The first session would need to start 8 weeks post surgery - so in 5 more weeks.  The first appointment would  last 3-4 hours and all subsequent appointments would be about 1-2 hours long. There are formulas to determine how much life span chemo would buy me.  It doesn't buy me much vs. skipping chemo - like only 2-3% extra.  So, there's that to decide upon.  Would it be worth it?

It was a lot to take in.  She recommended that we get a second opinion.  We're talking about that now:  Cleveland, Boston, or NYC.

Pathology report and more questions

Dr. Hetland just called with the pathology report.  My lymph nodes all tested negative.  All of my margins are clean.  They found 5 tumors measuring:  1.8 cm, 1.5 cm, 1.0 cm, 1.1 cm, 4mm.  This means that they found 2 more tumors that sonogram and MRI did not pick up.  Staging is based on the largest tumor, so I am at a stage 1 for breast cancer.  The next step is meeting with an oncologist.  They will make the decision, perhaps with the consult of a radiation therapist, whether or not I need radiation.  It sounds like they wouldn't normally recommend radiation for a tumor at stage 1 with clean margins, but the concern is that there are several tumors.

She will forward my pathology to an oncologist in Batavia and now I am back to the waiting game as they will call and set up an appointment with me at some time in the future.

Two more appointments in the near future:  Feb 13 post surgery appointment with Dr. Hetland and Feb 14 a follow up appointment with Dr. Vega.

Dave is full of angst, thinking we need several different opinions on whether I need radiation based on these results.  Here we go again.....