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.