Mutations and MRI's and Oxygen...Oh my!

WARNING: This post is not going to be the most positive thing you read. It's been a long hard week and I'm still trying to wrap my head around all that has gone on. This was my week off chemo - I usually look forward to that because I feel pretty good - almost normal.  However, this week was different.  I felt worse this week than I did on my chemo weeks which is totally not fair and super discouraging.  I saw Dr. Litton on Tuesday.  I was almost certain I was going to need a blood transfusion.  I was short of breath, dizzy, weak and my head had been pounding for 3 days.  I could not get my headache under control despite Ibuprofen, percocet, my wonderful Chiropractor, Craniosacral therapy, massage, essential oils....I tried everything.  My labs were drawn and they were absolutely nothing but normal.  I was sort of hoping that I needed blood, because that would explain all my symptoms.  When my labs came back normal I started to become concerned.  Dr. Litton was concerned that my breathing was getting worse despite 2 rounds of chemo.  He decided to get a chest xray to see what was going on. 

My most recent chest xray - still sporting a plural effusion and other yucky stuff.

 We talked about possibly doing a brain MRI, but decided to watch it since I wasn't having any other neurological problems.  We also went over the results of the cancer cells he sent for genomic testing. I had done some reading before my appointment about mutations with breast cancer cells so I would have some idea of what to expect if my cells had mutated.  Since I haven't been responding to treatment I should be responding to, I think we both were suspecting something was up.  So this part is the bad news...my cancer cells have lost their estrogen and progesterone receptors.  This is bad because without those receptors - the cells are harder to kill.  This is also bad because there are more chemotherapies they can use when you have those receptors.  When I was first diagnosed in 2013 my cells were 90% estrogen receptor positive.  So, these sneaky little cancer cells have mutated so they can stay alive. What a jerk move...  Also bad news #2 - there were some genomic mutations.
There are a bazillion different mutations that can occur.  I have been praying since Dr. Litton sent those stinking cells out for this test that out of all the mutations there could be -  I just didn't want to have the P53 mutation. P53 is the mutation NO ONE wants.  There are no targeted therapies for it, it is aggressive, and very difficult to treat.  Well...I had 2 mutations.  Just guess what one of the mutations was???!!!  Good ole' P53.  Are you kidding me???  This was hard news to swallow.

  I asked Dr. Litton how come every time I came in to see him, things just keep getting worse and worse.  He wheeled his stool right up next to me and hugged me and said, "Because you are a nurse...and because I like you so much."  Of course....the dreaded nurse curse...I sort of forgot about that.  If you don't know what the "nurse curse" is...basically when nurses have to be patients they seem to get all the obscure side effects of drugs and things just are more complicated and hard to treat.  I had this problem all through my first treatment.  I would have all the normal side effects and then also the horrible ones that no one really gets.  I got shingles, cellulitis, blisters on my feet, anaphylaxis  to chemo...the list went on and on.  I usually bring some kind of treat in when I see Dr Litton - on this day I brought the delicious chocolate covered mangoes.  I asked him if  I didn't bring a good enough treat for him and if I brought better treats would he give me better news?!
I went on my way over to St. Marks for my xray - if it looks worse (my disease in my lungs is progressing) then we will probably have to start IV chemo which means I have to get a port put back in.  As much as I don't want one I will be glad to have one since my veins are so bad and they can only use my left arm for IV's and blood draws.  My arm is getting really tired of being poked.
I called the next day for my results and to let them know my headache was even worse - basically not tolerable.  Dr. Litton was out of the office, but it was decided I better have a brain MRI to make sure the cancer hadn't spread to my brain.  Of course without any receptors and the P53 mutation - I am at higher risk for brain mets...nurse curse... Ugh...off to St. Marks for the 2nd time this week for the MRI.  Luckily my brain was fine, there is not a physical reason for my craziness.  Even though my brain was ok, my breathing was worse.
Friday I went in to see my palliative care doctor who is absolutely wonderful.  Dr. MacPherson has saved my bacon numerous times.  Friday was no different.  I usually see her for acupuncture to help with my side effects.  I was basically a train wreck, so we totally skipped acupuncture.  I was coughing and having such a hard time breathing with oxygen sats of 84%. She was  so concerned that I could have a blood clot in my lungs that she sent me over to St. Marks for the third time to have an angio/CT.  She also wanted a better look at what was going on with the disease in my lungs.  With my sats being so low I ended up buying myself continuous oxygen...joy of all joys.

The oxygen concentrator with extra long tubing to get around the house.

My little buddies

I'm thinking of starting up a Match.com profile...I'm pretty sure this will reel in a lot of great catches...especially in the 60-80 year old range.

 The good news was that I didn't have to stay overnight in the hospital because there was no clot.  Dr. Litton was not in the office on Friday so he will compare my chest CT's to see if we need to have a change in the chemo plan.  Weekends suck for that reason.  Everything gets put on hold and then I sit and worry and wonder what is coming next.

Even though I had a crappy week there were some bright spots.  On Wednesday my Bishop came over and gave me a really nice blessing.  There wasn't a dry eye in the room.

Before the blessing none of us could eat anything...I was too nervous about what might be said, but it was a really great experience and after we all decided we were famished - so we went to Robintino's - one of our favorite places to eat.

Mom and Dad (a.k.a Santa)

My favorite 16 year old - Dylan

Of course Maddie wouldn't look at the camera. :)

I had some sneaky angels leave these beautiful flowers and chocolate covered strawberries.  Even though they were trying to be sneaky - I knew exactly who it was, but since it was supposed to be anonymous, I will leave it at that.  After having such a lousy week it was just what I needed to keep going and face the next day.  And can I just say - I have dipped many a strawberry, and these are the best ones I have ever had!!  L - you are amazing!

These aren't the first pink roses this sweet Angel has given me - she is so thoughtful and always doing something nice for someone else.  There have been several times over the last 3 years of treatment/hard days that a pink rose would show up at my door step.  Love you R!!

I read this quote every day.  It helps me to keep fighting.

Maddie had her last band concert of the year.  She plays percussion - and I love watching her play all the different instruments.  She is great at what she does and I love that she loves music!  These pictures aren't great - dark auditoriums aren't the greatest for getting decent pictures.  I was having such a hard time breathing this night - I wasn't on oxygen yet.  I was just so happy I was able to go and see her play.

I was also able to go on a date with Parker to go shopping for graduation presents for his girlfriend Hannah.  It was nice to spend time with him - even if he wasn't very happy I was trying to take his picture at dinner.

I can't believe he is 19 and all grown up!

I was also able to go on a date with Dylan - he did not want his picture taken at all...too bad!  I love spending time with the kids together, but it is always nice to spend some one on one time with each of them.

Cute boy and delicious beverage!

"Mom...don't take my picture!"

Last but certainly not least, my cute coworkers LeEtta and Dawn brought me a delicious Keva Juice.  Man - I love Keva - but I have a hard time branching out from my regular favorites, but they brought me some kind of peachy heaven.  It tasted so yummy.  I'm pretty sure they brought it over after taunting me from work with their FIiZ beverages!

"Don't be jealous - we got FIIZ without you!"

So there you have it....the good the bad and the ugly.  Hopefully on Monday Dr. Litton will have looked at all my labs, scans, etc and have a new plan for me.  I'm disappointed, but he did say we still have options, so I will choose to have faith that one of the options is going to help get this disease under control...I've got lots to do and don't have time for this crap to get in my way!

Be brave, my heart. Have courage, my soul.

Tiffany