Cancer Journey

I went in to discuss my pathology reports with Dr. M today.  It was so good to see her.

I was very eager to hear the results of my Oncotype DX test, which we have spent 2 weeks waiting for, but the results were not in yet.  They do expect them today or tomorrow, but– we are keeping it interesting for you all again–these results will not tell us anything because they sent the original biopsy specimen instead of my surgical biopsy specimen.  So now, they have to do a second Oncotype DX test, which means 2 more weeks of waiting…CAN YOU BELIEVE THAT???

Dr. M was not happy about it, at all.

We were so relieved that it looked like insurance was going to cover the first test, but to get approval for the second test may be tricky.  These tests are $3,000 each!   All I gotta say is, if insurance does not agree to cover both, it is a good thing Todd’s dad is an attorney and can give us free legal advice!

Todd wrote about my pathology report here, and we really didn’t learn a whole lot more.  The reason why a second test is so important is because there are 2 different type of cancers we are dealing with now.  We knew about the Ductal Carcinoma because that is what showed up on my original biopsy.  The Lobular Carcinoma was shown in the surgical specimen, the tissue that was taken during my mastectomy.  The Oncotype DX test that was just done on the Ductal, she expects to come back as high risk, but that does not matter because chemo took care of that.  The second Oncotype DX test they do, which should have been done in the first place, will be on the Lobular Carcinoma tissue.  She said if she had to guess, she expects it to come back as Low risk, but is unsure and we just have to wait.

Low risk would mean I can go straight onto radiation, then hormone therapy (taking a pill, Tamoxifen, for 5 years) which would be great.

Med. risk, we are not sure what we would do.  It is a gray area.

High risk we will for sure do more chemo.

Lobular cancer is interesting.  It is more quiet, almost stealth like.  It is slower growing, but does tend to spread to lymph nodes like mine did.  It is harder to be felt, which is why it seemed like all that was left was scar tissue.  It responds well to hormone treatment, and less to chemo treatment, which could be why the Ductal is gone but the Lobular is not.  It does not show up as well on scans, which helps makes sense of my negative PET scan.  The lymph nodes did not show up on scans because they were minimally positive.  .8 centimeter is too small to show up on scans.

She sent us home with the surgical pathology report, and I have to tell you, it is WEIRD to read about yourself in this way.  Gives me shivers to read about my insides being removed and studied on the outside.  Here is an example of what I mean, again, just to keep you entertained:)

A. LEFT BREAST TISSUE: Received fresh (ew) in a container labeled “Bowman, Amy S. (that’s me!). Left breast tissue, two pieces with axillary tissue (lymph nodes) attached is 14.5 x 9.0 x 2.0 cm left mastectomy specimen. (told you I was small chested:)). On the anterior surface there is an ellipse of skin with a central nipple (yes, I had to go there!  That was the weirdest part for me to read so I have to share!!) The breast consists of 40% gray (gray?  is that normal?) fibrous and cystic soft tissue with a definite infiltrating lesion. (so glad to have that sucka out)…

…ok I’ll stop there, but there are 3 more pages:)  So. Very. Weird.

But not sad, because I must tell you, I really am beginning to like my new parts!!  Just wait… I’m sure I will write a post about it 🙂

So yes, more of the waiting game.  I am learning to laugh and shrug at these waiting games.  I’m trying to learn how to find joy in the journey, or on this “roller coaster” I might say, to find meaning in the ride.  More about that here...

Thank you for your continued prayers!

It was a good day and a bad day, all in one.

My husband had knee repair surgery and all went really well.  He woke up fine and did not get sick from anesthesia–all answered prayer.  I didn’t like seeing that I.V. go into the hand of the one I love.  It made me realize how great he has been through all of my sickness–it is not easy being the one watching!   

His dad came to the surgical center to take him home so I could get to my Oncologist appointment.  I was grateful I was able to stay long enough to see Todd awake and smiling before I had to leave.

My oncology appointment was really hard emotionally.

They had to flush my port, which meant walking through the chemo room.  I looked into the faces of those I knew would be feeling very sick for Christmas and my heart went out to them.  I found myself wanting to get out of that room quickly.  
My port has been achy lately, so I was relieved to have it flushed to avoid blood clots.  As they accessed it, a flood of memory and emotion came racing back along with the familiar smell and taste of metal, a strange thing that happens every time it is accessed.

Dr. Midathada came in the room, it was good to see her.  My mom and friend Carma came with. Seeing my mom was comforting and Carm is the best friend and note taker–thank goodness she was there, because I pretty much lost it emotionally at the beginning of the appointment and was numb through most of it.

One of the first things doc said was “Well, the MRI shows that the tumor is still there and is measurable, it was 6x2x1 (centimeters) now it is 5x1x.8.  This is when I went a bit numb.  All I heard was 5 centimeters!  My primary care doc told me last week that it was 2 x .8.  She left off the first number.  I don’t know why.  Frankly, it really ticked me off today, because it meant another surprise, and not a good one.

Doc said it could be scar tissue, but also said there was uptake in the area.  It is all so confusing!  Bottom line, we won’t know until after surgery and tissue is tested.

I asked if it had shrunk enough to be removed, she said yes.  

She said since the PET scan was clear it makes her wonder if it is cancer because there was no uptake shown on that particular scan. This is good.

One lymph node is still palpable.  It has not changed in size.  It does not light up on either scan and freely moves around. This is good.

My main tumor—doc has a hard time even feeling it.  She said it is a marked difference from when I first came in. This is confusing because of what that scan says, but this is good.

Right breast-she said there are “subtle areas, not sure, not clear, changes here and there” and told me not to get worked up about it. I’m trying to obey…

If there is cancer, if its microscopic disease (no measurable cells) then no more chemoIf measurable then I will have more chemo, it is a stronger one called adryamyocin  4-6 weeks after surgery / once every 2 weeks for 4 rounds (8 weeks).  She also said if it is in even one lymph node, we will do more chemo.

The BB spot on my left breast that I have been feeling, she felt, and said she is not worried about it. Confusing b/c that is also the spot that my primary care doc said showed up on the MRI as new cancer.  This is when I wonder if my Oncologist shoots straight enough with me, or if she leaves things unsaid because of all the unknowns and wants me to stay positive.

I asked if there is cancer why did the PET scan not show it?  She said it could be that the cancer is not one that feeds off glucose (for a PET scan you are injected with glucose to make the cancer cells happy so they light up) or that it is scar tissue.

So, after surgery we will know if we are dealing with scar tissue or cancer.  

I know this is a lot of details, sorry to the non-detailed type people reading it!  Most of this came from Carma’s notes, which again, I was so thankful for as I was a teary mess after doc’s first few sentences.

After doc left the room, I found myself really upset and mad.  The anger part kinda surprised me, but I was ticked!  I couldn’t pinpoint exactly what I was mad at, but my mom and Carma just sat there and lovingly listened while I let it all come blubbering out. It was all just a bit much, Todd’s surgery plus all the hard unknowns. I worn out and really could not get past that 5 centimeter number.

I knew Todd and the girls were waiting for me at home and that I needed to get it together.  This is when we had a funny moment.  I realized I needed to pull myself together for my family and reached into my purse for some lip gloss.  I walked to the mirror in the exam room and went to put it on, then looked at my red, blotchy- faced reflection, then turned and looked at my mom and Carma.  The look on my face was “what do I think lip gloss is gonna do for this mess”  Carm said “well, the pretty pink will match your nose!”  Lol.  I love her.

I was able to get it together by the time I got home.  My mom came over for awhile and had some gifts for my girls.  She offered to take them to a movie but I told her I just needed them around me tonight.

The girls and I had a great night.  They took turns using Todd’s crutches as a new toy, and we dipped pretzels in chocolate, made a breakfast casserole for tomorrow, and listened to Christmas music.  It really was a great night, boy do I find myself trying to hold on to every moment with them.  They are so precious.

The next three days we will have 3 Christmas celebrations with family, one per day.  Tomorrow it brunch at my house.  Seeing family, especially my baby nephew who is here from Kansas will be GREAT therapy for me!  I’m looking forward to a new day full of wonderful distractions from all this health stuff!!

Once again, thank you all for your love.  Thank you for reading these journals and commenting even on the long ones that go on forever like this one!  I am just so, so thankful for all of you.

Have a very, very, Merry Christmas!!
Isaiah 7:14
So the Lord himself will give you this sign: A virgin will become pregnant and give birth to a son, and she will name him Immanuel [God Is With Us]
He is with me.
He is with me.
He is WITH US!  
God is with us.