I'm fine...sort of...ok maybe not

Warning: this post may not be very positive or uplifting. It will be pure venting from the deep places in my heart.  Feel free to skip this post, but this blog is mostly for me and so I can do what I want!



I found this picture funny but at the same time so relevant to how I feel lately.  I feel like I have to look like everything is fine to make sure everyone else feels comfortable around me.  I don't want to be the whiny, complaining, frail, Debby downer cancer girl.  Trying to keep up this act is exhausting. Trying to pretend in front of everyone that my pain is in great control and I'm feeling good is difficult. It's hard because people don't know what to say or do and I don't know what to have them say or do either. You don't actually have to say anything because there isn't really anything to say except cancer is such a jerk! Well, I could call it many other things but I'm still trying to keep my potty mouth from going crazy.  I think my sister Robyn hears the worst of that...thank goodness she doesn't judge me on my cancer vocabulary. Ive been really angry lately. As much as I have fought and prayed and fasted and hoped and tried to have faith, this cancer is taking over my body.  I've had so much chemo that my bone marrow is having a hard time making my platelets. I haven't had chemo for over a month because of this. In the mean time every cancer cell in my body is proliferating at high speed.  This has made my breathing difficult and made it nearly impossible to even be up and walking around for more than a minute or two.  So I'm trapped...trapped in my bed or in a chair. It's got to be something pretty important for me to get to the car and then I'm trapped in a wheelchair because it's too laborious to walk.  I can't tell you  It's hard for a "do-er" like me to be trapped.  This also means I have to rely on other people to take me places so they can push me in the wheelchair.  I hate every second of this - having to become dependant on others.  I have been so independent my whole life that this is a huge deal to me. Don't get me wrong - I'm so glad to have people willing to help me, and a wheelchair to transport me and oxygen to help me breath, but I'm still just angry at the situation.
2 comments that really ticked me off this past week were the infamous "I know how you feel."  People say this and think it is helping and they mean well...but seriously people you never know how someone feels unless you have gone through the same thing.  You may think you know...but believe me ...you don't.  A lady sat down by me at a doctor's office and took one look at me while I was struggling to catch my breath and said "Well at least I don't have to have oxygen!"  I thought in my mind "what the crap did she just say???" It's a good thing I couldn't talk or I'm afraid of what I would have said to her.  If she would have been just a smidgen closer I think I might have punched her in the throat.

Ok...I guess we should probably switch gears now.  I was lucky enough to have my sister Robyn come up twice in the last little while.  Once for my lung drain to be put in and then again last week to help me recover from my knee surgery...oh yes you heard me - a knee surgery that was unexpected and unplanned.  I must have jinxed myself when I said my lung drain was the last surgery I intended on ever having.  One day I just woke up and my knee started hurting.  The next day it had swelled up huge and was spasming so bad that it was really aggravating mu neuropathy terribly - it was unbearable.  The ED wouldn't do anything about it but I was amazingly lucky enough to get into an ortho practice suggested by my good friend Lori Baron...the same afternoon even!  I saw Dr. Kingston's PA who suggested we drain it to see if it looked infected. I tell you - I am totally living the dream!  She was able to get some fluid out to send to be cultured.  She called Dr. Kingston who was out of the office that day and by the early evening I had her calling me back saying he had consulted with his partner Dr. Wooten who would be looking at it the next day to possibly go in and see what was causing the fluid build up.

Right knee swelling up

Draining that bad boy...yes, it did hurt - even with lidocaine

Some of the fluid that came out

So, we headed over the next morning to see Dr. Wooten and to be squeezed in between his cases he already had scheduled.  I have to say - He was wonderful! Great bedside manner and great Ortho skills.  Even though I had post op pain it was nothing like it was before I went in. If I had one more night of excruciating pain like it was causing I would have totally cut my leg off!!!

Gotta love those scars on my knees from all my falls!

Sporting the lovely hospital attire...gotta love it!

After Surgery

This my torn meniscus...I don't know how it happened, but there you go.  I also had a chondral flap with some lesions that he had to end up shaving off.

All fixed and ready to go.

3 days post op.

So my surgery was on a Thursday and then the very next day I was at the hospital getting a blood transfusion. The fun never ends...Even though I haven't had chemo for a while I'm still losing blood and my bone marrow isn't working fast enough to keep up.  This is probably why I'm needing transfusions:

This is the drainage from my lungs...the right lung has the bloody drainage.  I'm most likely draining like that because of low platelets and the catheter is irritating my lung. I know for sure it is irritating me in general!!

 Robyn is my entertainment through the transfusion. I even have a little bit of hair, but not for much longer.

My cute Dylan was able to go to MORP at VHS...he had the cutest date Hannah and they had a great time.

This is such a great group of kids.  I love these triplet Johnson boys. :)

Well, I will end with the latest on my health. Like I said earlier...chemo has been delayed due to low platelets.  I had to call the office because I just couldn't breathe and wondered if I could get chemo even though my counts were low...I was willing to get a platelet transfusion if I went to low.  I have to do something to get my lungs under control. The worse this gets the scarier it gets as well.  Dr Litton has been out of the office for a few weeks so I have sort of been in limbo.  He agreed to start a different chemo today and they will just watch my counts really closely.  So, today I got only a premed of dexamethasone and the drug Halaven. I hate chemo but I needed it desperately today...how weird is that???

This one is nice because it's just a 5 minute push.

Pick your poison

This is Ann...she gave my first chemo 4 years ago this month...the irony.  She had breast cancer over 20 years ago.

The best part about today is I got handed these in the drive through at Fiiz....probably because I keep them in business!!  So, if you want a drink let me know - we can go use these coupons.

I guess the thing that is making me the most angry and I can't do anything about it, is that I was diagnosed 4 years ago this month - March 19 to be exact.  I can't believe I'm still dealing with this but worse after 4 years. This was supposed to be gone completely in November of 2013.  As much as I have tried to not let it become the focus of everything, lately I just have no choice. Every day is an assessment of my current standing. Do I need blood, lung draining from just one or both lungs, my port, my fatigue, my activity, my pain, will I be able to drive today. It gets old...but like I said there is nothing I can do about it except keep putting one foot in front of the other and take things day by day - sometimes hour to hour. Even though things are rough I still hold on to hope, sometimes I feel like I'm hanging on to it so tight that it is strangled.  I hope this chemo I'm on now will give my lungs some relief and just a little more time.  I need more time.  I'm not ready to go yet.

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

There is always hope

Well, I had my left lung PleurX catheter placed on Tuesday.  The staff was amazing, I was able to have my most favorite nurse Serena and my sister Robyn was able to be there so all in all things went well despite not wanting to have the darn thing. The only hiccup was that my platelets were only 33 and they needed to be at least 50 to do the procedure.  So, they ended up ordering 2 units of platelets.  When they called the blood bank, they said they were out of platelets and they were holding the only platelets they had for the heart surgery patients. After calling the red cross and making some deals they were able to find me the platelets I needed to be able to continue. Thank you to all the donors out there that are willing to donate - I have needed a lot of blood products lately and wouldn't be able to make it through without the selfless donors.  If you can be a donor I would ask that you please donate - it is a great and easy way to be a hero!

Here is my most favorite nurse at St. Marks - Serena hanging my platelets after waiting 4 hours for them!

Lots of waiting...

More waiting....

So glad my sister could be there for me.  She is awesome!

 My left lung is going crazy - in the past week it has been drained three times for a total of 2200cc's of fluid which is way more than my right lung ever put out.  The recovery has been a little tough - it never feels good to have a hose sticking out of your chest wall.  I have had meals brought in, treats dropped off, texts and calls and some beautiful tulips brought over.  I adore tulips, they are one of the sweetest little flowers ever.  I have the best friends and family!

This past week was my youngest son's birthday.  He is the sweetest boy.  He is always checking on me to see if I need anything.  He calls from work to see if he can pick up a drink or anything I might need.  He makes sure I'm comfortable and well taken care of.  He makes my heart so happy.  He just turned 17 - I can hardly believe this little boy is 17!! I love you Dylan with my whole entire heart!!

Loving this oreo cake!

Breakfast at Black Bear Diner...his favorite breakfast joint.

This is one of my favorite pictures of my bubba. 

Two weeks ago I had the opportunity to go to Time Out For Women in Layton.  It was such a great weekend with great people.  There were amazing speakers and beautiful music that really touched my heart.  I was able to meet one of the singers - Nathan Pacheco.  His voice is like butter - I could listen to him sing all day long.  He was also so genuine and kind when we spoke.  What a nice person...so humble and cute!

Love that smile!

Signing my CD

Good friends...great weekend!

I was also able to have lunch with a good friend Holly and her amazing son Spencer who was treated for Rhabdomyosarcoma and is a walking miracle.  Holly always has a way of filling up my love bucket. She gets me and always knows what I need to hear.  I love her and her family so much.  I'm so glad our paths have crossed.  I know she is my sister...I just cannot have enough sisters, that's for sure!

I just love this momma!!

So....now here comes the hard part.  Let's just start off with this statement:

Enough said...

I'm so tired of cancer, tired of people being diagnosed with it, tired of it ruining people's lives, tired of it turning things upside down, just so tired.  

I saw Dr. Litton yesterday.  We have come to the conclusion that my chemo 1- isn't working, and 2-has become too toxic to my bone marrow.  The frustrating part of it too is that it isn't very vascular where my pleural effusions are so the chemo can't get to the cancer cells in the fluid around my lungs. It isn't possible to put chemotherapy in that pleural space or in the lungs. So we talked about several things - and came up with a plan.  

1- We will get a CT scan of my chest, abdomen and pelvis so we have a starting point of reference      from here on out.

2- We will start my third line of chemo which is called Eribulin or Halaven. It typically has all the        same side effects of most chemo. Nausea, vomiting, hair loss, mouth sores...all the good stuff. I've      read that after 3 lines of chemo basically nothing will work...and I'm running out of chemo that            is even effective on triple negative breast cancer.  I said to Dr. Litton "so we are coming to the end      then..."  His response was "I'm worried that we are."  These are words you don't want your                  Oncologist to ever say. :(  I have had a hard time processing our conversation and end up crying          every time I think about it.  It is becoming ever so real, and while I have tried to really stay in              reality, this seems so surreal. I would love to crawl up in a little hole of denial and live there for a        while.  I told Dr. Litton I was a little disappointed because I had heard he was the "bone marrow          whisperer" and since I was a patient of his, my bone marrow should be recovering without                  problems. He laughed and said, "well I'll whisper and pray that your bone marrow will recover -          whatever works!!"  I just love that guy...I'm sure he thinks I'm a dork.  Even though we had hard          news I still try to find some kind of humor to get through.  

3-Dr. Litton said he has some homework to do.  He is going to try to find a clinical trial for me to try. I know that this won't cure me, but if I can help with forwarding research and it gives me a little         more time, I ought to try it. If he can't find a trial he will try to find some off label cocktail that           might work for a while.  If you were to look at me from the outside except for the oxygen and my       super short hair, you would never even know anything was wrong.  This all seems so weird to me.

4-I get to take off 2 weeks from treatment so my bone marrow can have a break and fully recover for the next step.  I always like taking breaks, but then my mind goes crazy knowing all those cancer       cells are multiplying, dividing and multiplying more.  I knew I never liked math...

I've tried to prepare for this but this quote is so right...it's much different when you get to this point.

We are not giving up!

I've got a lot of work to do these next few months to put everything in order. I pray that I will feel good enough to do the things I need to do to create some lasting memories for my kids and family. We still have a lot of hope, maybe the clinical trial will yield some good results - you never know. Thank you for all the support, love and prayers on mine and my family's behalf.  We feel them and we love and appreciate you!

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

Tiffany