Tuesday, February 26, 2013

busy week

This week is a busy one for me. Today, I went to Hackensack to start the process for the enrollment in their clinical study. If I decide to go this route, it essentially will be Taxol chemo again with the possibility of Avastin which is under study for possible FDA indication in metastatic breast cancer. I did all the prep so that if I decide to go that route, the process is underway and treatment can begin soon. Needless to say, it was a LONG day, but I got through it. Thank you Donna for the company, moral support, and chuckles. Oh and for not letting me beat up the CT scan registration people.

Tomorrow is just a normal day in life for me. I work a full day. Not tests, no consults. Imagine that!

Thursday is where things get tricky. My consult with Sloan is at 4 in NYC. It's the big time! I am going to share Hackensack's thoughts with them and see what they have to say. Then I need to hunker down with Steven and think long and hard about what my next steps will be. Please understand that this is a really hard process for us. There is a possibility of switching oncologists this week. That's a very scary prospect for me.

Although we have struggled in our treatment success, I have developed a great relationship and very much respect my doctor. I actually was getting emotional at the thought of potentially leaving his practice. If it's what I need to do, then Steve and I will make that decision, and so be it. I will do whatever we decide is best. But it will be hard if leaving him is what we need to do.

Pray for me that I make the best decision for the best outcome for myself this week. Pray that I get clarity that I currently do not have.

Friday, February 22, 2013

balloons

There are times when I am weighed down under the seriousness and stress of my disease. It's a scary deal, knowing that my body is trying to attack itself. It is not pleasant to think of the treatment that lies ahead. Add that to normal every day stressors, and it gets overwhelming.

This week was one of those weeks for me. It was a tough one. Very emotional, very busy, very overwhelming. But then there were the balloons.

A tidal wave of pink ribbons and turtles on facebook from my sorority sisters, many of whom I haven't seen in about 15 years. A message of love and hope from 3 sisters who have repeatedly snuck up on me with happy surprises and support. The kind of best friends who can tell me what I need to hear, and keep my head on straight when I need them most. Random cards in the mail, or notes of support. Emails and flowers. A wonderful friend who is casting on with yarn to keep my head warm. Another sweet friend who is always on stand by with a joke when I need one. A silly son. Family who I can always count on for emotional support, help when I need it or to drive my sorry ass to my appointments. New and old friends who treat me like a normal person, not a cancer patient. A husband who has washed more dishes, and cooked more meals than I can count... And who gave me the good pizza, while he ate the burnt pieces.

Each one of these and more are balloons for my spirit. The more balloons I have, the higher my spirits. I need to keep my spirits up. The fight ahead is a long one. I expect the road will be bumpy. But I am lucky to have balloons to help me. I need them to keep me from falling down, and staying there.

I know chemo is coming. I know how demoralizing chemo feels. I just got my hair to where I want it to be, and it's going to be taken away from me again. But if that's the cost of the fight, so be it. I have balloons to lift me up. And for that, I am grateful.

Wednesday, February 20, 2013

dreams

Last night, I dreamed that I was in my parents old basement. I was hanging out, minding my own business. Suddenly, I saw a huge spider slide down a web from the ceiling. Then there was another one, and before I knew it, there were countless spiders and other bugs creeping around, and some even crawling on me. I freaked out (and I am sure a reader or two might be shuttering too). SO gross! In the dream, at first I panicked. Then a faceless voice told me to get bug spray and kill the bugs, so I did.

I woke up at 2 a.m. with the creepy-crawly feeling and a decent hot flash from my battle with the bugs. So since I was awake and had time to kill before I could go back to sleep, I checked out the dream bible dictionary website to see what it said about my dream. Here's what I found:

"Spiders
To dream of a spider represents feeling trapped or hopeless. A negative situation that feels inevitable or impossible to escape. Beliefs about things that you think are permanent or will never go away.

Alternatively, spiders may reflect irrational beliefs. Powerful insecurities that prevent you from doing what you want in life. Irrational fears that prevent you from enjoying yourself, or powerful desires for things you don't believe you can ever have."


Here's how I'm taking this. Of course I feel like i'm somewhat trapped in the world of metastatic breast cancer. I know it's something I can never really get out of. However, It's not hopeless, and I can do something about it, hence the bug spray. I guess that was the chemo popping into my dream.

Moral of my dream story is this. There are times throughout this ongoing journey when I am scared out of my mind. There are times when I feel like I am stuck and can never get better... And then there are times when I get my head on straight and grab the bug spray and move on.

Thursday, February 14, 2013

You mean pink isn't just for ribbons?

Nope. It's the color of love. It was funny to see fb all pink today and NOT have it do anything with breast cancer. I had become so conditioned to associate pink with a disease, that I forgot its more conventional meaning: love.

I received pink flowers this week, and a pink prayer shawl. Both acts of love. It's amazing how something like cancer makes you forget things you once knew. Valentine's day, cupid, pink hearts... That's what pink used to be associated with for me. At first, I was taken aback, and happily relieved to see the sea of pink have nothing to do with mutant cells today. Hurray!

I had forgotten. I was too focused pink representing on awareness, research, and treatment. Then I realized something: pink, even when it's in ribbon form is still representative of love. I suppose the color was chosen because breast cancer is typically girly, but I think it really is because there is so much love surrounding those of us with cancer. Love and support are the best complimentary therapies there are. And there are no side effects.

Happy Valentine's Day everyone!

Wednesday, February 13, 2013

Oh Cancer, will you just frigging stop already?

So, the bastard is back again. The biopsy confimed that the cancer is active and kicking in my body. DAMMIT! I am on a roller coaster right now. The prognosis is strong still. It's not great, but it's doable. They repeatedly reminded me that bony metatasis does not kill people. The trick is to keep it out of the places that could. Talk about pressure.

The next chapter is likely to include chemo. Radiation is possible, but it depends on the chemo. Radiation would certainly kill the spot in my leg. The problem is that there are cells floating around my body looking for the next place to grow. That's what we need to stop.

The spot in my bone is ER-negative, PR-mildly positive, and Her2 negative. So no more hormonal torture for me because it's not working and I don't have much hormonal activity going on anymore. Now it's the rogue cells that need to be hunted down and killed. I am grateful to have a plan. I will be going to Sloan for a follow up/second opinion. But likelihood is, wigs and hats are in my future. I can't lie. That part plain sucks!! I was loving my hair... I don't want to go back to being bald and ugly. Men can pull it off. Me, not so much :-(

The drugs they are talking about should be very manageable. I should be able to work and even go into the office regularly. I should be able to exercise (watch out Jami). I can travel, and live my life. Just rocking the hairless look.

The other sucky part about all of this is seeing my loved ones stressed to the maxed and heartbroken. My cancer doesn't really bring out the best in people who are worried about me. That breaks my heart. I know it's not my fault, but it still kills me to see. Please pray for all of them that they can find peace in this and be ok with all of this. It makes it so much harder for me when I see the hurt in their own eyes.

Tomorrow, I go back to my surgeon for the followup and I pick up my copies of my sloan paperwork and then I wait. I should hear from Sloan in the next week as to who can meet with me.

I did have one good sign. the very first thing I saw when I walked in the cancer center was a story of a woman who has been fighting metastatic disease for more than 20 years. Mark my words, I will be like that too. I will not quit. I will fight like hell... I have too much to live for. Life has to go on. I have too much to do!

Friday, February 1, 2013

Medical update

I know there have been a lot of questions surrounding this latest new development. Let me bring everyone up to speed. In September, my tumor markers were up. We did scans then that revealed I had a spot on my spine that was suspicious for cancer. They wanted to biopsy it for the purposes of checking the tumor profile with the thought that if the her2 protein was showing over expression, we could add herceptin to my treatment mix. Unfortunately, the location of the lesion was too tricky and the information was not worth risking my life for. So we treated it with what we knew, and radiated it.

Fast forward to January and time for follow up scans. The good news is, the original lesion on L2 was showing no cancer activity and by all 4 scans was healing beautifully. The bad news is, there were two new areas of concern that popped up as possible issues. Another on my spine (this one T11), and one in my right femur. A few weeks prior to the scan, I fell down a flight of stairs, so we were hoping that some how, the concerns were related to that. So MRIs followed.

The T11 spot was consistent with injury, and was deemed not cancer related at this time. The right femur however, looks consistent with cancer, and a biopsy has been ordered to confirm and to check again for the her2 marker. That brings us to today.

What will happen today is they will knock me out (and hopefully put some good antinausea meds in the bag), they will do what is called an open biopsy where they will make a small incision in my leg, and then drill through the bone to the spot to get a sample. Aren't you all jealous? What an exciting Friday afternoon! UGH! So to allow the bone to heal from it's date with a drill, I will be on crutches for two weeks and can't drive. I should get the full results on February 13th...but might the preliminary "is it cancer or is it not" part sooner... Truth be told, it is very likely cancer, but you just never know. Either way, I am ready for whatever comes next. If it's time for more treatment, so be it.

I also will be seeking a second opinion at Sloan to see if we are missing something or even just to get validation on my current course of treatment. I am relentless and will keep doing what I need to to beat this thing. If I am successful at knocking out this tumor, that will be the third time I have beaten back this disease in less than two years. Let's hope 3 times a charm and I get a little break in the action after this!

Thanks for the prayers love and support. They are always welcome and appreciated. I also would ask for prayers for my family. Everyone is struggling with this. I hate seeing them hurting because they are worried about me.