March 23, 2016

the quiet

I've been accused of being very quiet online lately.

We're on our 3rd cycle of chemo.

It's hard and it stinks and we can't wait for it to be over.

When I'm at the lake house, I feel like a single mother with an extra, ill human to look after. Todd is generally tired and weak from the chemo. I am generally tired and weak from the chemo.

When we're in Seattle I have little ability to do much but fret over him. Although I'm sure I don't do enough, I feel like I need to be feeding/watering/blanketing/etc. him. I have the contents of the "Nourishment Center" cupboards memorized and often recite them to him, lest he forget something he might want. As it turns out, there's not much he wants in the Nourishment Center.

I have been silent online.

This is hard for me to talk about.

I don't talk about it offline all that much either.

I have a strange and strong desire to move my family deep into the mountains in a cabin by a lake for the next four years.

People spoke out against our decision to move forward with chemo. They felt it was wrong and would do more harm than good and felt it their duty to warn us as such.

How dare you?

I so often brushed it aside noting that I was sure they had good intentions.

However good it was intended, it wasn't right. And it's made me feel like I can't talk about this horrible thing called chemo, lest I be told it's our own fault and we did it to ourselves.

I've never in my life felt so judged and alienated.

Now, this was not the majority. Of the hundreds - yes, hundreds! - of messages, emails, texts, calls, cards, etc. we've received since this all started, it was relatively few that were of this nature.

Unless you* read the medical reports, you* are not qualified nor invited to share your* opinions and I kindly ask you* to keep your* advice to yourself* in the future when you* hear that someone has cancer.
*you being general you, people who feel it's their place to give advice without being asked

I guess I needed to rant a bit. This is actually not at all what I planned on writing when I set out to write an update. So. Moving on.

Before chemo began, Todd's tumor markers were measured in his blood. This is basically the amount of cancer cells floating around like they're on vacation. I imagine them as if tubing around a lazy river pool.


Anyhow, before chemo Todd's markers were at 64. At the beginning of cycle two they were down to 28. Doc was hopefully they'd be so low that they wouldn't even show up this time, but we just got the results from Monday's blood work and they're at 12. Not gone, but going. Thrilled at the progress.

After the last 3 weeks of chemo which started Monday, Doc expects them to be gone.


Chemo is 3 weeks from being a thing of the past. Surgery is scheduled. Let me tell you about that. The tumor, which has shrunk some, we know from the pain level (currently at ZERO), is still very much taking up space in Todd's abdomen. We can feel it. We knew going into this that some of the tumor wouldn't respond to chemo, though there was no way of knowing how much. He'll go in for new scans in a month and then we'll be able to see how much shrunk. The remaining tumor will have to be cut out.

Now, if you've been following along on this journey you may remember that the tumor is around several main arteries and veins. Well, it might still be. We met with the surgeon last week and he said that the surgery can take up to FIFTEEN hours.

Bless that man's hands.

If the thing is till wrapped around the arteries and veins, it will have to be cut out layer by layer, ever so delicately. I'm thankful there are people in this world who thought to be trained to do such things. I can't even.

The surgery is the last week in May.

After that, recovery.

So, that's the latest. Maybe someday I'll be able to write about the long days and dark nights we are living at present. As it is, I'll spare the details and ask for your ongoing prayers for our family.

Thank you for the prayers and support that have been shown to our family. I have been trying to write thank-you cards but there is no way to truly thank everyone I want to thank. Maybe someday we'll find a way. But for now - thank you from the bottom to the tops of our hearts!!!


Unknown said...

Yay for the markers getting lower! We too had the many unsolicited warnings and advice for choosing to do chemo...I feel you! I am keeping you and your family in my prayers and just so thankful that his body is responding to the treatment. I will especially be praying when they do the surgery...Dr. Stewart did my mom's surgery...10 hours...I don't know how he did it and I am also so thankful for skilled surgeons! You are in God's hands and He's got this for you! Love and Hugs!

Angie said...

I'm so glad to hear the markers are down! Praise the Lord! As far as the criticisms, they should walk in your shoes a few miles before handing our advice. Hang in there! God is with you and I'm sure Todd appreciates all the support you are giving him. Prayers for strength for you both!

TN Quiltbug said...

Thank you for taking the time and energy to share this update! It helps us to focus our prayers more. I am SO sorry for the "advice" given by some--they had no right. Although I have not walked the cancer valley, I have walked the path of having a child born with a disability. This gives me just a glimmer of understanding, as I gave been critized for accepting state funded therapy for my son, as well as "advised" to simply give X, Y, or Z herbal suppliment which they were certain would "cure" him. Never mind the fact that they didn't even really know what was "wrong" with him in the first place. . .

My heart hurts for you, but mostly my heart prays for you.


La Tea Dah said...

Bless you, Cas. My mother was diagnosed with stage 3 sarcoma a few years ago. We took essentially the same path that you are on. She had people calling her to tell her she was wrong to go the chemo route as well. But, they didn't know or understand the grave tenacity of sarcoma. Many hours were spent at her bedside in Seattle. At one time she was hospitalized for five weeks --- straight. I understand what you are going through and my prayers are with you. I'll keep on praying. God be with you.

bonzobuddybear said...

Praying! I know something of the valley. But we have come out the other side and the sunshine is beautiful. I believe you will too. :) Hang in there. The blessings are coming.

Jan said...

Thank you for your brutal honesty! It is important for people to know how their words affect a person. You are doing the right thing with the chemo, it is the hard thing, for sure, but it is the right thing. Love you, and hardly know you!

Jan Ellis

Stephanie said...

I can't even believe that anyone-- nevertheless friends-- would "advise" you of that! What if you had taken their OPINIONS??!!!.... I understand it's very "unnatural" and painful and horrible! But really?!... We live in a day-in-age with technology to save lives, why would we not take advantage of that? Wow! I am SO very sorry you had to deal with such negativity during such a hard time! I know easier said than done, but at least for now try to dwell on all of the positive thoughts and prayers and support! Your whole family has been in my prayers (sorry I haven't written you to say so). And, I am also rooting for that vacation for your family when your all done!! ��

Unknown said...

I was just asking Steph how you were doing this morning. Please know we pray for you in Australia as well. I watched my best friend deal with her husband's diagnosis of cancer a few years back, so my heart goes out to you. It can be a dark, rudderless journey for family members, and can feel at times like there is a tear in your soul, just dripping away the essence of who you are - as a wife, as a mother, as a person, and you just can't make it stop. Please know that in those moments, friends and strangers are holding you up, much like Aaron held up Moses' arm when he could no longer hold it up himself. It's hard to see others when you're in that darkness, but we're there, all around you, believing for you & in you.

Unknown said...

My Dear Friends,
When I met you at Wa. Camp Meeting., I felt drawn to you because you have a son named Samuel too. My son, who was a twin, died a few weeks before he was 5 years old. He had been diagnosed with meduloblastoma. Please know that I understand your struggle, the stuff you are going through with people and all their comments or advice, the scary, dark nights and painful, lonely days. I love you guys and I am keeping you in my prayers. Life has never been the same for us but God is the same. He is so faithful! He is with you and will never let you go. Thank you for sharing your experience.

Aloha 'oe ,

Katrina Hovanski

Brigitte said...

I'm not writing much, since everyone else has said what I would want to say already, but I want you to know that we are praying for you and sending our love!

Unknown said...

I've been there, facing a barrage of criticism when I'm still in shock from learning my 4yo has cancer. It hurt deeply then, and sometimes still pricks my heart with pain. One night when I was feeling very low, God let me know that for every voice raised in criticism, there were many more voices raised in prayer on my family's behalf. I know there are many, many voices bringing your family before God's throne of grace. Mine is one of them. Our family's cancer journey motto is "God is Faithful". Some days are harder than others to say it, but is always true.

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