Summer camp and update 7/9/2014

July 9th, 2014 § 49 comments

IMG_8583Now that all three of our children are at sleep away camp I get asked a lot “what I’m doing with all of my free time” and “what fun things I have planned.” Clearly what people think life is like for me are a bit skewed. I have nothing planned. I can’t travel and haven’t been able to take a trip for over a year. I’ve missed family celebrations, holidays, and get-togethers. I’ve eschewed visits from family and friends because I’m not well enough. What others consider “free time” is recovery from chemotherapy and struggling to do day-to-day functioning including the many medical appointments. Being able to make it out for a coffee date is a thrill and isn’t possible many days. Most of the rest of the time my “free time” is spent in bed fighting nausea or fatigue or pain or other side effects.

For the last few weeks my blood counts were sliding and I couldn’t do anything without huffing and puffing in a much more severe way than usual. I struggled to bend over to pick something off the floor without needing to sit down to catch my breath. My hemoglobin levels had been hovering around 8.2 for months and I pushed through but they dropped to 7.2 and by then it seemed I needed a boost to be functional. Ten days ago I received two units of red cells in a transfusion that because of some problems with the samples and testing and a five hour infusion ended up being a ten hour marathon day. It was so worth it. Red counts came up within days and I felt better starting about 24 hours after receiving the cells and that continued to increase within two to three days. My platelets were also very low at 24 but regenerated on their own (low platelets are a predictable result of this chemo regimen) and I was able to avoid a transfusion of those. This was, by the way, the first time I had ever had a blood transfusion in my life.

I had chemo yesterday: Carboplatin and Gemzar cycle #6 (that means I’ve had 6 infusions of Carboplatin and 11 of Gemzar so far). Starting now, but especially with cycle 7 and every time after that, there is a risk (reported at 27% for round 7, here is an article for anyone interested) of an anaphylactic reaction to the Carboplatin (and the other platinum-based chemotherapies like it). We are being conservative and premedicating with drugs that will hopefully help blunt or avoid this type of reaction altogether. There isn’t any reliable way to predict if it will happen to any individual patient. I did have a reaction to Taxol when I received it in the metastatic setting (after not having a reaction the first time I had 4 cycles of it seven years ago) but that is not a reliable indicator of a reaction to platinum-baed drugs.

It will be time for a scan soon I think, we are watching my tumor markers which have dropped consistently in the last few months which is fantastic but on yesterday’s test just stabilized without a drop. We’ll have to see if this is just stabilization (fine) or if this is the start of the chemo losing its effect. It is unsettling to think about losing another chemo combination that has been working, even though it’s a tough regimen to tolerate.

My voice has returned to almost normal unless I use it on the phone or talk a lot. With the kids gone I really am not talking much. I had an extra five days off chemo because my oncologist was on vacation and that allowed me to get things done I usually don’t have enough rebound time to do. The transfusion timing helped too.

IMG_8515I haven’t been outside much, the humidity and heat have been too oppressive for me, but I am hopeful it will break soon. I do try to make it to the beach once a week to get a change of scenery.

We will get to see the kids this weekend and I can’t wait to hug them and hear all of their stories before they go back. They love camp, always have. They look forward to it year-round and now that they all go it’s great they can share these stories and experiences (they are 15, 12, and 8. Last year the youngest begged to go for a week to try it out. We said yes, knowing his siblings would be there and he would have a blast. Five days in he called in tears, begging to stay. That repeated every week until after a month we said it was time to come home!).

Some may wonder why, at this time, I let them go instead of keeping them home with me. I do it because it’s not about me. It’s about them. It’s something they love. It’s an important routine, tradition (this is the sixth year for the oldest). In my eyes, it’s important that they have a change of scenery, freedom to be kids, get away from the ways my cancer and its chronic treatment limit what I can do, and therefore what they can do. It’s a gift I can give them and I also feel it reassures them that I am doing better than I was a few months ago. This is important.

IMG_8614I love having them away from electronics, away from wondering if asking me to take them somewhere or do something with them will be “too much” or “bothering me” which I know the older ones are always concerned with. I want them to be with friends old and new, having fun with young and energetic counselors, trying new things. There are so many (most/all) physical activities  I cannot do with them that they can do there. So many new games to play, achievements, laughs, experiences. I never hesitated when they were ready to sign up last October for this summer. I knew that no matter what, they needed and deserved it. On the left is my favorite photo from camp so far: Tristan getting hooked in to try rock wall climbing for the first time. It makes me laugh every time I look at that facial expression!

That doesn’t mean it’s easy for us to be apart. We are very close. Especially the older kids worry about me I am sure. But I stay in touch by email, will see them on visiting days, and I send them weekly care packages.

But the truth is that separation is good. It’s a selfless act for me to teach them how to to be without me. One of the most important things, in my mind. Coddling them and making them stay home is not what I feel is best for them right now. It is part of our job as parents to teach our children how to be independent, how to solve problems on their own, how to go off in the world without us for whatever reason. I will always want more time with them. It will never be enough for me. But this is my old age. I must teach them as many lessons as I can, while I can, for as long as I can. And that is true for everyone, but of course I have not only the urgency to do it NOW but also I have no idea how long I have and will likely be debilitated in some form until that time comes.

Yes, it’s true no one knows how long they have to live. But those diagnosed with a terminal disease know what is most likely to kill them. And that their time is not just going to be shortened, but consumed daily with the treatment and effects of that disease. It’s not having a normal, healthy life that is relatively good and healthy until a sudden accident happens. It’s just not the same as the general worries of growing older or aches and pains. It’s never-ending. I don’t get to count down how many chemotherapy (or other treatment) sessions until I’m done this time. Being done will mean there is nothing left for me to try. Anyone who has had chemo or radiation or some other type of therapy knows how important it is to have an endpoint, a countdown. Knowing that will never happen (and in fact what you’re really hoping for is a lot of them, because that means you still have options) is one of the mental struggles each week, since it isn’t just spending one day a week getting chemo, it’s how it makes you feel each day after that.

My hair is growing slowly back on this current combo. I know many people mistakenly think this means I’m “better.” I do like that soon I won’t be covering my head and that means I can be more invisible in public. But I also know how many comments I get on the occasions I have done it that people think I am done with chemo or all better. Not all chemotherapies cause hair to come out. My hair will come and go numerous times by the time we are done with this. Its presence or absence only indicates something about which chemo I’m on, not its success or failure.

Someone on Twitter asked for my piece on what to say and how to be a friend to someone who has cancer/serious illness. Here is a link for anyone that missed it and is interested (it’s too long to include the text in this post).

Also, I am including two posts from last year at this time. One on the eve of the kids’ departure for camp and one written while they were away. Of course I was doing even better than I am now, my thoughts were similar, but not as urgent, strong, painful as they have been the last seven months.

I’ll post again with an update if there is anything to report on change in treatment, scan results, etc. For now we stay the course which is not easy, but is the best possible choice of the options I have right now. And that’s the best I can do.

I appreciate the support, as always!

…………………………………………….

In these last remaining hours (Camp) original post here

In these last remaining hours
Before my children disappear

One,
Two,
Three…

In these last remaining hours before they go and spread their wings again,
Leave this nest,
I miss them already.

I put the dinner pots and pans away.
Wipe the crumbs from the table,
Load the dishwasher,
Play fetch with the dog.

I sit in the garden,
Listen to the wind in the trees,
The birds settling down before nightfall,
As we settle, too.

I tuck them in one last time,
Hear their doors click shut.

One,
Two,
Three.

Tomorrow night there will be no mess to clean,
No yelling upstairs that the TV has been left on again,
No trunks piled high with carefully labeled belongings in the dining room.

I will cry, I know.
Not because I am sad that they are going– no, that gives me great joy.
Children being children.
Forgetting stress at home and doing new and varied things.
I cheer their independence.

I will cry because I know they will always need me somehow and I just wish I could be there for them to outgrow
by choice,
by time,
by age.

I hear the mother bird in the tree calling out.
I don’t know to whom.
I will be like that tomorrow,
calling out,
with no child to hear.

……………………………………………………….

Like dollhouse rooms left abandoned (original post here)

Like dollhouse rooms left abandoned,
The rooms stay tidy:
Beds made tight,
Pillows square,
Hampers empty.

It’s been one week since the children left for camp.
Littlest Tristan was due back yesterday but a few days ago he said he was having so much fun he wanted to stay another week.

I realized this week that after being sick for the previous two that I needed this time to catch up, to rest, to regroup.

I miss them but am so glad they are having fun doing what they love.

I pack up care packages,
write letters,
wake in the middle of the night and mentally picture our children sleeping in cabin beds.

Our dog Lucy follows me, sleeps in my room now, not Paige’s.
She doesn’t want to be alone and stays within feet of me every moment.

I tell her it’s okay:
The kids will come back.
The rooms will get messy again.
There will be crumbs dropped at the dinner table and car rides galore.

Paige and Colin and Tristan will come back tired and dirty and happy.
They will come back.
They will.

That is the key.

I think of absence like a hole:
How different it is when it’s temporary and filled with happiness,
Rather than when that hole is a pit of grief. Of ache. Of loss.
The way it will someday be for them.

 

I just want

June 4th, 2013 § 30 comments

IMG_5860I just want to see my son play baseball,
Watch him wave at me when he’s on base.

I just want to take my daughter shopping for makeup,
Applying powder to her porcelain skin.

I just want to read with my youngest one,
Snuggled up in bed together turning pages of a book.

I just want to grow old with my husband,
Continue to share our lives as we have for twenty-two years already now.

I just want to sit in the garden when we are old.
I just want to talk about the good old days.

I don’t want to read about mTOR inhibitors or side effects or months of disease-free progression.
I want to read beach fluff and skim through cheesy magazines.

I want to get a pedicure and have a nap in the chair.
I want choosing the color of my nail polish to be the toughest decision I have to make for a day.

I don’t want to read reports from the ASCO conference or tweets about new research findings.

I just want it to go away.
But it can’t.
It won’t.

I will never know another day of my life without metastatic cancer or chemo or treatment or dread.

But I will search for joy.
I will.

I will do what I can every day to find that joy,
And if I can’t find it I will make it.
This is my pledge,
This is my promise.
For them.

Some days it is hard to do.
Some days fear and sadness are too much.
Some days I do not know how I will do this with grace,
But I will try.

I must make the most of this time:
Helping others, educating, writing.
I know no other way to do this.
But it’s the hardest thing to do.

I cry, I give in to the emotions, but only for a few minutes.
No good can come from that.
I gather strength.
I re-commit.
I go on living.

The bad days will come someday.

But that day is not today.
That time is not now.
And so I am a parent, a wife, a friend, a sister, a daughter, a writer, and everything else I have been until now.
That is who I am.
That is who I will continue to be.

For as long as I possibly can.

Out of the water

May 31st, 2013 § 24 comments

IMG_5808This afternoon I will attend my youngest child’s Field Day. It will be a steamy 93 degrees here and I will join parents as we stand around and chat while we clap for our children and hug their sweaty bodies and remind them to drink lots of water.

It is always in these group events that so many of us feel like outsiders. It is often when surrounded by many people we are most aware of being alone. For me, this has never been more true than during the past 8 months since my diagnosis with stage IV breast cancer.

I return again and again to the desire to escape, the need to flee, the pull toward being somewhere else. The refrain in the new song I am co-writing with Doug Allen is about this need we all have, regardless of the cause, to take moments during the day where we just “check out” for a bit. It says:

I take a trip inside my head,
I don’t know where I go.
Somewhere else,
Anywhere else,
Far from things I know.

There are days when I want to be the ostrich, when I just am so overwhelmed with things that I can’t be on social media, returning emails, or even talking. I just am still. I notice that I rarely read anymore, even television can’t capture my attention. I sit in silence a lot, and when I have the opportunity I write or work on the songs.

I take those trips inside my head.

The pull of educating and informing is too strong to allow me to stay hidden away, though. Social gravity pulls me back. Sharing and documenting fuel me. I take my anger, my sadness, and my grief and I send them out into the world in constructive words and deeds. I can feel powerless and without control in many ways about what is happening to me but I always feel that I can control my reaction to these things. This is my lesson to the people in my life.

There is a scene in the film Children of a Lesser God where William Hurt’s character jumps into a pool to try to experience utter silence the way that his deaf girlfriend does. He wants to know what that feels like. He quickly realizes, however, that this won’t work. He knows when he rises to the surface he will once again hear sound. He can’t live what she lives. He can’t share her loss in that way.

Antoine de Saint-Exupery wrote, “It is such a secret place, the land of tears.” Most mornings I stand in the shower for a while longer than I need to. I listen to the water, I think about the day, I am grateful to have another. I know I will have more days. For those few minutes I take a trip inside my head. I gather my strength, I focus on the work to be done.

I turn off the water, I step out of the enclosure, and I rejoin the world of the living. That’s what I am doing every day: living with metastatic cancer.

Walking side by side

May 2nd, 2013 § 25 comments

I have my father’s walk,
A slow, deliberate, long-gaited stride.
I have my mother’s smile, her voice, compassion.

I can’t yet see myself in my children,
I wonder if it is always that way.

I remember as a teen the day I actually could match my father stride-for-stride,
My smaller feet dwarfed by his size 13 shoes.
I remember thinking I was a grownup then.

I was wrong, of course.
I had no clue what being an adult was.

I learned.
Yes, I did.
I yearn to go back to those days,
Perhaps I was not carefree but I was taken care of.
Knowing my parents were in charge,
I felt safe, protected.

Now I am a parent in charge,
I must be ready.

My children try to match my steps, still unable to.
I yearn for the day they can.
I hope I will be beside them when they are old enough to mirror my stride.

Not just beside them in spirit.
That’s not enough.
I want more.

When they think they are grownups
I want to be there too.

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