Monday, July 21, 2014

It's graph time.  I haven't posted one of these in a long time.
So, if you are new to my blog - I when I have a drop in my CA27.29 I like to chart it. (find out what CA27.29 means here and my reason for charting here

I love seeing the line slope down and to the right.  I am also a very visual person.  I can get through a spreadsheet pretty well, but I would still rather get top-level information in a graphic. 

Unfortunately today's graph does not look like I thought it would. Yes, we do have a pretty good trend going here. But, I flat-lined this month, see that little straight tail on the end?  I thought for sure I would drop that tumor marker again and be so close to 0. 

What does this mean?
Not anything bad.  I didn't spike like back in Feb 2012.  But, it may be that I have built up a resistance to this chemo. My tumor marker is very telling.  When it stops dropping then a switch in chemo is on the near horizon.

Dr. J has been wanting to go back to Xeloda. (read about how this worked before here or get scientific about it with clinical info here) The up side of this is that I already have a bottle full of Xeloda right here at home, so if we go back to this I can start poppin' pills, no waiting for approval from insurance or going to the pharmacy.  And taking a pill means not going to the oncologist every week for an IV. Also, even though I didn't feel very good on this medicine, it was working great.  Maybe it will help me knock out cancer.

I am also working on my yellow rice recipe.  Turmeric (the yellow of yellow rice) & ginger are thought to help fight cancer.  Once this week it turned out great.  The second time I made it strong because if a little is good a little more is better, right?  I ate it because I wanted it to kill the cancer, but it didn't taste good.  Since I ate that over seasoned rice I know I can manage Xeloda.

I have to keep my head in the game and enjoy every day, because being here with my three wild angels is what I want most in the world. 

I really have a pretty awesome life. My babies are the most amazing people.  They are so sweet and good.  I have a rockstar family - we live far apart but I know they care and are praying for me. And, everywhere I go I am surrounded by friends and people who care. 
It was hard for me to tell the people at work about my cancer, but when I was going to loose my hair it was time.  They have been AMAZING! I love going to church because those people are like family. Every week I know there are people who will come and find me to ask how I am doing and so many hugs.  And, I have friends all around the world who stay in touch and cheer me on - thank you Facebook.

How did I get so lucky? How can so many people love me?  I am just an average girl but I have it so good.

Friday, July 18, 2014

Wear my hair for Thanksgiving

My new goal is to be able to wear my hair by Thanksgiving. I can't do a whole lot about it, but I am doing what I can. A lot of dreaming about it, visualizing it, meals packed with Protien and praying. 
I am hopeful that on turkey day I will be NED (that highly coveted status of showing no evidence of disease) and have my own hair. Oh, wouldn't it be nice? I dream of being like Rapanzle, long hair that ushers in a new life. 
However, for every step forward that I take a part of me feels something like guilt or sorrow. I think of my friends who have died  or my friends who lost a parent because of their cancer. I also think of my friends who battle today with hope or doom on the horizon. I can't help but wonder, why me?  Why am I so lucky? There is no answer to this question. I have heard of many cancer patients who feel the same. This is one of those things that only the mercy of Jesus Christ can resolve in the next life. 
So, I keep setting goals and holding on to hope and the love of my family and friends. And, I try to live a life worthy of the miracle that I am alive. There have been times death was so close but I am raising my babies and working full time. Truly, a miracle. 

Sunday, June 29, 2014

8 years post diagnosis

Today is my 8 year cancer-versary. My baby was only 6 months old and every symptom I had could easily be explained away by being a new mom. In fact, after I called to make an appointment with my OBGYN I was chatting with my sister on the phone and explained why I should cancel the appointment and not waste my time, or theirs. Thankfully Jenn convinced me to go, even if it was just to ease her mind. Silly sister, but I couldn't disappoint her. 
The PA kept the visit very short and rushed me out the door for a mammogram and ultrasound. Tearfully, the PA told me it wasn't good news. I assured her it was going to be ok. I didn't have cancer and they would see that in the tests. 
It was cancer. But, I didn't cry that day. At least, I don't remember crying.  I do remember everyone around me crying and I assured them it was going to be fine. 
Then I did cry. I cried at my chemo treatments for months, I cried during the biopsy, I cried when I looked at my babies who I couldn't hold because of the intense pain of surgeries and the fear I was dying an ugly death. 
My treatments began with 6 months of chemo, surgery, radiation and continued herceptin. Then I stayed on hormone therapy for 5 years. During the time of hormone blocking therapy my official diagnosis was breast cancer, NED (no evidence of disease).  
About this time 3 years ago I was having intense back pain and, like the first time, I chalked the problems up to something else. Foolishly ignoring my risk for a recurrence of cancer. I ignored it for months, until in an effort to be responsible with follow-up treatments and being hopeful that I could have an oncologist tell me I was cured, I went in for a check-up and found out the cancer growing again.
This diagnosis led to a change in the hormone therapy. I went through several until none of them worked anymore. Then I started chemotherapy again. I am on my third type of chemo since being diagnosed with metastatic breast cancer and it is looking good so far. 
I am still in active treatment, but have seen some success recently and I am hopeful that there could be a break for me in the future.  However, since the cancer has metastasized to distant sites, I am a permanent cancer patient.
Cancer sucks! But, life with cancer has given me many gifts. First, the people who aren't true friends go away. I didn't have to do anything, they just faded away. I have found wonderful friends and have seen the good in humanity. I have been able to encourage others in the same journey. 
What's in my future? I don't know. 
But, today is a sad day.  A reminder of bad news and rotten things. Tomorrow is another day. And I will pull myself up and cope.  But, today I get to be sad. 

Wednesday, May 28, 2014

130, but who's counting?

My tumor markers are ... Virtually equal to my previous count. 
Why we don't care:
1. It's just a number. 
2. It's almost the same number as before (136)
3. No amount if care (worry) will change it. 
4. It has only been one cycle of the drug, you can't tell much yet. 

But, there are miracles and tender mercies abundant in my life. 
I work with an awesome team of friends who have very generously showered me with gift cards to make the next many weeks and months easy. I have awlays been extremely blessed to have co-workers who become dear friends. 
My babies are so sweet!  They are thoughtful and teachable. 
I have taught them they have as much of an impact on our happiness as a family and the successful operation of our home as I do. And, they have learned to own their responsibility in making our lives successful. 
This week I have also enjoyed a reprieve from the side effects of chemo. I have felt so much better, which only shows how badly I was feeling. It has been a miracle that I was able to do everything I did in the last few weeks. I have been supported and sustained by a higher power. 
So, tomorrow begins cycle 2. I will start again and see how Eribulin treats me. I hope more gently than last cycle. But, if not, I will keep going, keep managing one hour at a time if I must. 

Ok- took a whirl to post this. I started writing last Sunday; today is Thursday. It was a fun day being able to take my daughter to work. But, in chemo days I worked through the weekend and am wiped out in a bad way. 
I had chemo on Monday, normally it is on Thursday. So, if it had been Thursday when I had chemo I would have had Sat ans Sun to sleep, instead, I had Tues, Wed and Thurs at work instead of having the last two days at home. I will be so happy to have a weekend of rest. 
Meanwhile, happy day to have dinner being delivered, pizza, and to spend the evening in rest. 


Monday, May 19, 2014

What is the Chemo Eribulin (Halaven) like?

So, I have finished round 1 of Eribulin/Halaven.  Each round consists of two treatments on consecutive weeks and a week off in between. About 50% of patients have few or no side effects. I have not fallen into that group. I am very defendant on my anti-nausea meds over the 3 days following infusion. I also get intense headaches and feel pretty exhausted. 
I have my infusion on Thursday. Friday I got home from work and went to bed. I was there all weekend except for driving the girls to and from some of their activities. Thankfully, we had help with that too. Monday comes and I wake up early. I lie in bed repeating affirmations in my mind that I can make it to work, I have rested enough. Today I got through my shower and started normal preparations, but my body is still doped up.  It just won't function quite right. So, I am taking a sick day.  I can't remember if this is my first or second one this year- either way I have been very successful at powering through. That's a blessing to count for sure! 
I don't know if I will lose my hair, again, it isn't a definite reaction to this chemo, but possible. If I do, I don't think I will hassle with scarves all summer. Too hot. 
I am afraid I am at the point where all the best tips for making chemo more tolerable are "labor intensive" and I struggle to have the energy to keep them up. 
I am struggling with a lot of things right now. But, I am trusting that this chemo is working.  Of course it is, that's why I feel so rotten.  (Scientifically this is not true.  Many cancer patients struggle with a drug just to find it isn't effective for them.)  But, I trust in The Lord, and in the words of a preisthood blessing, telling me this will be an effective chemo for me. This will stop the growth of the cancer. And, I am holding on to the faith of others that I can be one of the 2% who can be cured of stage 4 breast cancer. It will be a miracle. I do believe in miracles. 
More blessings: 
7. I have the best kids
8. I have sick days at work to use when I need
9. My family and friends have faith when mine is worn down
10. Warm heating pads