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Whack-a-mole, whack-a-cancer

5/18/2014

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Many thanks for your continual love for me and your many expressions of concern as I have processed the news of cancer progression.  I still have no real strong emotion presenting itself, but I do have the niggles of concern that this is the "beginning of the end."  Now that the cancer is on the move, can it be stopped?  Or will it just march relentlessly onward?

The game "Whack-a-Mole" has been used to describe the approach to treating metastatic breast cancer.  The cancer pops up and you quickly whack it with a mallet, only to see it pop up somewhere else.  Just as in the actual game, at first, the "mole" (cancer) pops up one at a time and you are able to push it back into its hole quite rapidly.  However, as the game (cancer) becomes more advanced, the moles (cancer) pop up two, three, four at a time, and the player (patient's medical team) is left scrambling to whack them down as quickly as possible.  At some point, everything stops working and the moles (cancer) takes over the entire board (body).

I have no idea what stage of the game my body is in.  It's been in the one location pop-up for eighteen months, but there is no real indication as to what this next development is.  A single pop-up?  A start of multiple pop-ups? I must admit to being afraid at times.

My glucose levels are dropping and I may be able to go off insulin this week.  We're still in a "figure-it-out" point in learning if I will be a diabetic for the rest of my life.

In spite of my having the cleanest bone scans I've had in months, I've been experiencing moderate-to-at-times-severe back pains for a few days now.  I'll be calling in about them this week.  I've been off treatment since Tuesday and I wonder if this is "detox" of some kind as I've discontinued two drugs.

I will start my new treatment tomorrow, provided it arrives when it is supposed to.  (It is being mailed to me.)  The most common side effects are: Nausea, vomiting, loss of appetite, constipation, tiredness, weakness, back/joint/muscle pain, headache, dizziness, trouble sleeping, skin darkening, or dry/itchy skin may occur. It seems one of the most common side effects is skin related, dealing with hands and feet becoming extremely dry, cracked and sensitive.  I've loaded up on the creams that have been recommended to me.

I may lose my hair again.  It's been thinning quite a bit with my most recent treatments, so at least I've been transitioning for a few months.  Hair is no big deal so I'll just deal with what may come, one day at a time. 

I think some of the toughest things about living with Stage IV (terminal) metastatic cancer are the end-of-life discussions with my husband and children.  I am very open with Rachel and Michael and they know they can talk to me about anything.  I told them the news the day I received it and yesterday, Michael was able to talk through his fears and concerns.  It took him a few days to process the initial information and we did have a good talk about it.  Rachel and I have had several talks about how this cancer is likely to progress.  Both children (and Art, too), take comfort that most of the time, the family will have a bit of notice as to when the end is near.  I think that relieved Michael's mind that I'm not going to suddenly drop dead in front of him.  However, he point blank says that he wants more than a few more years ... that he wants me to see him grow up, watch him marry and play with his children.  Poor kids ... this shouldn't be a part of their teen years.  I'm always able to be calm during these discussions, but when they are over, I find myself wanting to curl up in a ball somewhere to cry over their reality.

I have an amazing life and so far, I'm gifted each day with a miracle to rise up and live another day.  But some days, I wish I weren't weighted down with the knowledge that my body is failing at a much more rapid rate than the general population.  Yes, it gives me the advantage of preparation and of focusing on living today, but it has its many disadvantages as well.  

I am not going to "beat" cancer.  I have absolutely zero control over how the cancer will respond to treatments.  No amount of positive thinking will change my body's response to cancer treatments.  No amount of exercise and no amount of proper eating will change my body's response.  That's one of the scary things for me ... there's nothing  I can do other than to continue to give each day to God and to accept the daily gift He gives to me.

I spend more of my time living my life rather than mourning what is to come.  However, I am laying it all out on the table today to admit that yes, at times, I am afraid.  

Please pray for me and our family.  Pray for complete healing.  Pray about the back pain, new treatment, side effects and our family's ever changing "normal."  Pray that we are able to keep our eyes focused on the giver of life and not on the length of life. Pray that we exercise daily by walking with the Lord.


This just isn't how I imagined my life to be.


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Disease progression

5/13/2014

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We knew this day would come. As I've said before, the life of a metastatic cancer patient generally follows a cycle of "scan, treat, repeat." The goal of treatments is to keep the cancer stabilized in its current location, hopefully with regression at the same time.

For eighteen months, the cancer in my body has been mostly stable in my bones, with some signs of progression within the bones at times. Monday's scans actually showed lots of healing in the bones and they are looking very strong, with no signs of breaking, etc. There are no new tumors in the bones.

However, the scans did show that I have multiple/numerous (both words were used) "low attenuation lesions" in my liver. A low attenuation lesion just describes the specific radiographic appearance of a spot in the liver as being less dense than other (normal) liver tissue. While such a description doesn't say exactly what the lesions are, it has been noted in my scans that these are consistent with the development of metastatic disease. All of the lesions are very small.

In short, I now have liver mets.

I was taken off the trial drug and will start an oral chemotherapy named Xeloda. Xeloda is an established drug with proven success in keeping breast cancer metastases stable. One of the women in my local mets group was on Xeloda for two years without any progression ... I hope I can be on it just as long, or even longer. This drug has a two weeks on/one week off cycle and I will be rescanned in mid-July after I complete three cycles.

Blood work shows no liver impairment. There is no fluid build up anywhere and all other organs (lungs, heart, stomach, etc.) are clear.

I do have intestinal inflammation (not related to cancer) that hopefully will go down now that I am off the trial drug. In fact, that's a big positive in this scene ... that the diabetes may disappear now! The next few days will determine if my glucose levels return to normal on their own. I will probably always have to watch my carb intake, but hopefully, I won't have to be as stringent about it as I've been for the last few months.

I continue to live a daily miracle. I don't feel like I'm seeing the light at the end of a tunnel because I'm not even in a tunnel. However, I do see the light of the world who gives me life. 

I am grateful. 
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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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