Struggling but moving the right way



Test Levels

Here is a graph of the blood tests for tumor marker CA27.29

It is telling you, that at a point in time when the Onc didn't expect to see any decrease in the tumor levels they are dropping.  Getting well below the 50 mark would score a "normal" rating.

My feelings: this is because of all the wonderful people praying for me, offering help with meals, housework, kids, laundry and sending love.

My (non-medical) opinion of what will happen:  I will continue to get "sick" after treatments.  I think it will build up and get tougher as time goes on, but it is still nothing compared to chemo.  I will get through the treatment that is needed, and earn my NED status.

My hope: Someone can explain why my joints are hurting so much, find a solution and I will feel better.

The look of Stage IV Cancer

I have read a variety of blogs and comments about how stage IV cancer patients look. It is often confusing to friends and family to see someone with cancer. There is a hollywood image of cancer patients that is a little scary looking: a hollow look, grey-ish skin, bones protruding from an incredibly skinny body, etc.  But, cancer doesn't always look like that; often cancer patients look so average, well if the hair thing doesn't tip you off.
With many chemo cocktails used to treat Breast Cancer the anti-nausea drugs and those given to prevent a reaction include steroids.  Most breast cancer survivor blogs I read include discussion of treatment weight gain from steroids.  So, there you are with cancer, and plumping up like the goodyear blimp.
Cancer treatment can also change your taste buds. Plus, eating healthful foods becomes more important as you are trying to fuel your immune system, and your appearance improves.
In fact, when I was being treated the first time, after I found a good medical team, I think I looked pretty good.  Here I am with one of my sisters.

Me and My sister- first time in treatment - 5 years ago.

This was pretty early in treatment. I had lost my hair (obvious, right?) but still had some eyelashes. My skin still has a glow and my eyes are bright.  I really good wig and some false lashes I could have fooled most people about my cancer.
I am looking pretty healthy now, and friends are often surprised saying I look better than they expected.  I am glad to hear that I am looking pretty good, thank you.
I think this is due to several things: help from family, focusing on getting more fruit and veggies, which as been easier with the green smoothies, and the fabulous meals our friends have brought.  I love it when my friend, a nurse, brings nice meals with a focus on fruits with antioxidants.  She is so thoughtful to include that little boost to help.  I have also been tremendously blessed in many, many more ways.
Of course enjoying a LONG weekend is really good for everyones health.  I bought some new jammies for the kiddies this weekend, super warm ones along with slipper socks.  They were so cuddly warm they even slept in!
Stage IV cancer can look so average.  Depending on the current treatment, how long you have been in treatment, your support system and other factors, a cancer patient can look like any one out there.
You probably don't feel like an average person though.  I feel like I'm walking a fine line between wherever I am and a really bad prognosis.  I am sure I will get well this time, there is zero question in my mind that I will be NED (no evidence of disease), but I am not sure if I will get there on this treatment or if I will have to use chemo.  I am hopeful but nervous.
I don't know if or when the doctors will find new tumors.  I hope to be into the next decade of my life, maybe even older before I am told that I need treatment again.  I hope if the cancer comes back it will grow someplace less vital to my wellbeing- like my bones, as compared to my liver, lungs or brain.  But, for now, I have to stay the course.
I have a test on Thursday.  Hopefully the results show there isn't an increase in the tumor marker, or progression of tumor growth.  Then the next test, in a month, should show a drop in the tumor markers as the treatment drugs will have had time to attack and act on the tumors.  These results would show successful response to the treatment.
I will have monthly blood tests to pass, and every three months I will have bone scans to track the activity (and as time goes on, lack of activity) in my bones.  What we want is for this to take me to the point of no activity or NED which is theoretically guaranteed with my current diagnosis.
Once I reach this point I just hold on, with a hope and prayer, for as long as I continue to be NED.  Maybe when I get rid of the tumors in my bones I will start introducing myself as "Ned"because I will be proud to have that diagnosis as long as God will let me keep it.
So for now, I will use positive thinking, guided imagery, and all the drugs the onc and I agree will help.  I am cleaning the trouble and stress out of my life so my body can use more energy to making me well.  And, I am going to enjoy Christmas.  I love Thanksgiving- because it leads into Christmas and it is also the feelings of Christmas without the distractions.
Celebrate with me!  Count your blessings, make your life more positive, and enjoy what life has for you right now.
Love, Kel

Naps on the PET/CT Scan Table

If you are new to cancer world you might like to know what it is like to have a PET/CT Scan.  I always wanted to read a patients account of each treatment type before I had it, because it let me get psyched up.

This morning (6:30 am) I had my PET/CT.  This radioactive, glow-in-the-dark, chills-up-your-spine test itsn't such a big deal, as long as it all goes as planned.  I have had a few.  I do remember my first test though.  The second biggest problem was my nerves.  I just didn't know what to expect.  The biggest problem was the inscy-wincy spider that was spinning a web on the machine.  He was just little, but I just wanted him to go away and not drop down onto my body and crawl up to  my face.  Yes, that was my true fear.

Today's scan was critter free.  

What is a PET/CT Scan Like?
It all starts with trying to limit any physical activity for a day or two before the test.  You don't want any parts of your body metabolizing if you can help it.  Of course this means nothing to eat or drink after midnight... you know the drill.  Because of the fasting, I like to get the test done early.  Also, it is safe to assume that following the test and a good meal you can go back to work, so save as many sick days/hours as possible and just get this out of the way.

When you arrive at the radiology center you will be swept away to a small room with a hospital grade lazyboy recliner.  Using either old-fashioned veins or your sporty-modern port, you will get pumped up with radioactive contrast.  The reactions to this vary.  Some people have a metalic taste in their mouth, I have to steady my equilibrium. Whatever you feel, don't freak out just tell the tech.  I figure, they are trained to know "weird" vs. "scary" reactions, so just keep them informed.

Now you get 60 minutes to nap.  Just kick back, sleep if you can, and let that contrast circulate through your whole body. Admittedly if you aren't used to the plastic lazyboy this may be tough.  If you can't sleep sometimes they have quiet music they can play.  Again, communicate with the tech.  Let him know if you are nervous and see what they can do for you.

Once your entire body is "glow-in-the-dark" (you don't really glow) you get to trade in that icky plastic chair for the narrowest, flattest, coldest board ever made. 30 minutes!  You will get to lie on your back.  And, don't worry, they aren't afraid you will go crazy, everyone gets strapped in.  Just think, if you fall asleep you don't have to worry about your arms slidding off the board. This is the bone-chillin part of the exam.  They keep the scan room pretty cool.  I suggest wearing yoga pants and a longer sleeve t-shirt. Whatever you do, make sure you aren't wearing anything metal or you will have to change into a hospital issued drafty-dress. Brr.
You will "ride" all the way through the machine once or twice.  I think this is to get everything lined up between you, the machine, and the computer read-out.  Then you will move back through the machine as it scans one section of your body at a time.  It is slow, but harmless. That's it.  You can now go get something to eat and get back to the business of your life because all this hype leads up to some more waiting.

You take the test, but the results have to be processed, read by a professional (i.e. not the tech who just spent 2 hours with you) and then results formalized and sent to your oncologist.

So you'll wait.  Like I am waiting now.

Cancer will teach you to really control your mind or it will make you insane.
This blog helps me.  This isn't  my first time to the rodeo.  Because I have had cancer before with a full round of treatment and several scary tests that came back to show everything was fine, I am waiting until I tell most friends and family about this round of tests.  If it is serious, then I will cope with breaking the news again, planning childcare and treatment plans, and psyching myself up for whatever it is.  But, for now it is just me and you.  (You being anyone in the world that finds my blog, so I guess there are a lot of us)  I am giving myself the treatment.  Breakfast out as a reward for taking my test.  Calm days at work- no stress allowed. And enjoying the fact that for today I am cancer free. 
Whether I am cancer free tomorrow after seeing the doctor or not, I am free today.  And, today is all that matters.

I really hope that you get a good zen place.  Learn to control your mind so you can control your emotions and stress, and find your strength.  Is it you and blog world? You and a best friend? A religious leader? What ever it is, Be Strong. Be Beautiful.

Blood Tests

I am finally able to call myself a 5 year Breast Cancer Survivor.

Proud of my new title I went in for a check-up with the Onc.

I knew there was something when he took so long to come back to the room after the exam. Well, there were concerns with the blood they tested earlier this week, the CA27.29 is elevated. This tumor marker, though reputable for its lack of reliability, signals that there may be an enemy setting up camp in my bones.

How do I know this? After a bilateral mastectomy where else can it go?

Damn bones, I thought I was just weak and suffering from carrying extra weight. Funny thing, every doctor is concerned about your weight unless you are facing a cancer fight. Then, it is all about your blood, bones, and soft tissue.

So now what?

Well, I get to wait until they call me to schedule a PET/CT. This totally awesome experience is all about skipping meals and pumping your veins with something a little more action packed than blood. PET scans are high priced naps on a narrow, hard board inside a little tiny, cold tunnel with radioactive glucose matter coursing through your veins.

Scientifically speaking: The radioactive glucose is radioactive, so visable on scan results, and glucose (or sugar filled) so it is metabolized quickly in the areas of the body that are most active. And, cancer cells are active! Duh, they multipy and divide like maniacs. That is how they find the areas that appear to be cancerous.

Well, pump me up- Make me glow in the dark. I can take it.