My journey to shoot for the moon.

Some of you got emails regarding Chris’ latest visit with the Oncologist.  Some of you saw postings on FB.  For those of you who aren’t on our email list or friends on FB, here is the latest.  If you are new to reading my blog, you can read the beginning of the story here.

The cancer in Chris’ lung is stable.  It hasn’t grown and it is about the same size as when they found it 26 months ago.  This means that the clinical trial drug is doing what it is supposed to and holding things in check.

However, the cancer has spread to Chris’ brain.  The doctor said that they are seeing this in patients who have been on the clinical trial drug for 12 months or longer.  Chris is starting his 19 month on the clinical trial drug.  There are two areas of concern in Chris’ brain – one is a very tiny cluster (1 mm or less) and one is larger and was obvious to us when we saw the scans.  The larger cluster is closer to 1 cm.  And we know that it wasn’t there in March 2011 when Chris had his last scan.

Apparently, the clinical trial drug does not cross the blood/brain barrier.  So, the cancer cells aren’t prevented from spreading to the brain.  And since they can’t find anywhere to go besides the brain (as the drug prevents them), they tend to show up there.

Thinking about having cancer cells showing up in the brain is unpleasant.  Finding out that they are actually there is devastating.  While we were prepared for the cancer to “get smart” and “win” over the clinical trial drug, hearing that the cancer is in Chris’ brain is awful.

Chris is meeting with the Radiation Oncologist on Jan. 6.  I’m not sure that I can go with him, as it will only be my 3rd day at my new job and obviously, I want to make sure that I don’t miss any extra time.  Having a job is such a big deal for me right now and I really need to make sure that I am on-the-ball so that I can put myself in a position for a full-time position in the fall (with benefits!).

The Oncologist told us that the Radiation Oncologist would discuss the options for treatment with us in detail.  But, it is my understanding that there are two ways they can treat the cancer in Chris’ brain:  spot radiation or whole brain radiation.  I am not sure what the pros/cons are for either treatment and this is something that Chris will discuss with the doctor.

Right now, all Chris wants to do is forget about the whole thing.  This is difficult because his family and friends are upset and want to talk with him.  I know that they are well-meaning and care for him, but texting, sending him messages on FB and calling isn’t really for him.  It is for them.  Chris fights cancer daily and I think that many people go on with their lives, not really thinking about him until there is a crisis.  I know that they want to support him during this difficult time, but the last 26 months have all been difficult.  I think that this is the part that people don’t understand.  There are a few people that we can count on, no matter what.  However, the majority of people are only there when we hit a crisis point.

If Chris stops taking the clinical trial drug, the cancer will spread.  While the clinical trial drug is in pill format, it is a form of chemo.  He has side-effects.  He doesn’t feel well.  He is tired.  His gastrointestinal system is distressed.  He worries about every change his body goes through and if the side-effects are worse than normal, he worries that the cancer has spread.  He has body aches.  There have been few days since his diagnosis that he has felt very good.  And he goes to work.

While everyone goes about their lives, our family is living with cancer.  If Chris coughs the boys look at me, questioningly.  And I hold my breath.  Every time Chris takes his temperature (which is frequently) we all kinda wait to see if we will need to take a trip to the hospital (if Chris’ temperature goes up to 100.3, I think, it means that he could have an infection and we need to go to the hospital).  The boys and I are in a constant state of waiting.  Waiting to see what happens next.  We may forget about Chris’ cancer for a bit as we go on with our lives, but usually it isn’t far from our thoughts.  Many of my statements start with “Depending on how Dad is feeling. . . “.  And it sucks.

I know that it is natural for people to want to support him when he gets bad news.  But honestly, there has been very little good news in the last two years.  His need for support is no different today than it was two days ago, or last week, or last month.  He still has Stage IV Lung Cancer.  There is still no cure for his cancer.  Yes, there has been a change.  But the Oncologist is fairly confident that radiation will wipe out the cancer in Chris’ brain.  When this happens, the cancer in Chris’ lung will remain.  That will not change.

I suspect that this post sounds critical of our family and friends.  It isn’t meant to be.  I understand that they are across the country and don’t see the daily impact of cancer on our lives.  It is hard to relate to what we are going through.

But I’m tired.  I’m tired of the worry and the uncertainty.  I’m tired of trying to think of every possibility and plan for them.  I’m tired of hospital visits and Chris feeling sick.  I’m tired of wishing things were better.  I’m dang tired of hearing that we aren’t given more than we can handle.  And I’m tired of hearing how amazing I am and that people don’t know how I do it (Really, what choice do I have?  Give up?  Stop living?).

I want to have a pity party that lasts for more than a few minutes.  I want someone to come take care of me.  (And right now, this is a big one – since I fell and hurt my foot, I’m exhausted trying to do what I would do in a normal day and it feels that everything around here is falling apart).  I want to scream and cry and throw a massive tantrum.  I want someone to explain, Why us?  I want to be able to relax and stop worrying.  I want to run away and leave it all behind.  I want Chris’ cancer to magically disappear and all of this to be over.

I am sure if I am tired of all of those things  that Chris is too, to a greater degree.

Unfortunately, I am not going to get what I want.  Neither is Chris.  We all are dealing because we don’t have a choice.  So, we’ll start the New Year with more rounds of treatment for Chris.  And we’ll try to get past my bad mood.

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Comments on: "Chris’ Cancer Update and My Bad Mood- December 21, 2011" (6)

  1. Robin, you have every right to have these feelings… and anyone who has taken the time to read an article on How Can I Help A Friend Who Has Cancer would already have read exactly what you have written. My dad has been fighting his cancer for 6 years now and recently it came back. My stepmom has been taking care of him for so long and was just as exhausted and drained as you are. One day at work, she was nearly in tears. She needed a break. A big break. Long story short, her boss arranged for her to have ALL of October, November and December off with pay to spend time with my dad while he starts chemo again.

    I, too, had pretty much given up on the world. I was blown away when I was told this news On Thanksgivng. How can my job be so incredibly negative and hers come through with such blazing glory? I just want you to know that no matter how awful things get, you are entitled to every single feeling you feel. You have the right to protect your sons, yourself and your husband from the extra “noise” you are now having to deal with, along with the surprise diagnosis.

    I do not know much about my dad’s cancer (multiple myeloma), but I know that I was told it has eaten away at his hip, his skull and his shoulder by the time they found it and if it was there 6 years ago, as well as in his blood, it will only continue to spread. I appreciate your updates and have been very worried about you not posting.

    I understand your wanting everything to go just right with the new job. I strongly support you attending his appointment on day 3, but I totally understand your wanting to be where you need to be on that day to make you feel comfortable in your own skin.

    Constantly balancing that wanting to do and be the right thing at the right time for the right reasons seems to be what you are going through and right now that is what I am struggling with, too. The guilt trips I lay on myself are unbearable. I am sending you a gigantic hug and hoping you understand that I do understand your every word. I thank my lucky stars that I met you through FLYLady so I at least now that you DO know how to love yourself. Thank you for reminding us that we need to step up to the plate and help you on that journey.

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    • Jessica –

      You bring up some very good points. It is amazing how some people pull together to make things better. They are truly gifts. I’ll do another post on this subject – many people don’t read the comments and I don’t want them to miss this.

      HUGS!
      Robin

      Like

  2. There are no words…

    On Feb.3, 2011 we were told that my beloved David had stage IIIB inoperable lung cancer; he had 18 mos. to live.

    Six months later he was gone.

    There are no words to express what he suffered, what I went through as I watched day by day.

    You must be strong, you have to be positive, doctors aren’t always right, etc. You hear this and then they are gone … you are left to fight this battle alone.

    It is this aloneness that wore me down, the struggle that goes on inside (still). And no one can help because…

    There are no words.

    Like

    • Maxi –

      Your pain brings tears to my eyes. And you are right – there are no words.

      But please know that I stand there, next to you holding your hand – in my thoughts.

      Like

  3. You and your family were uppermost in my prayers at Christmas Mass tonight.

    Like

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