No Break for Me

Wasn't it John Lennon who wrote, "Life is what happens when you're busy making other plans"?

It may not have been Lennon who wrote those words, but they describe my life during the past couple of months all too well.

Anemia. Meltdowns. A doctor who fired me. A second cancer, melanoma. Problems with my younger son. Ongoing problems in the treatment room at my cancer center.

By the time I went to visit Dr. Livingston in Tucson back in mid-May, I was ready to refuse treatment, and just let things float for awhile. Because, as with so many people living with cancer, my problems were caused by the TREATMENT, not the cancer.

Dr. Livingston rode to my rescue, I thought, when he suggested that I could safely take several months off from treatment (Herceptin, Avastin, and oral Cytoxan, plus various drugs to control the side effects of treatment), as long as I was closely monitored by my new oncologist in Seattle.

I was dancing off the walls with joy. And of course I blogged about it.

A Break From Treatment

A Cancer-Free Month

Then, just a week or so ago, my right arm started hurting, and I began to wonder if I was going to get that break from treatment that I so desperately wanted, after all.

The Break That Wasn’t (Maybe)

After waffling for a few days, I bravely called Dr. Lee and admitted that my arm really did hurt, and it was getting worse, not better. So he scheduled me for an MRI yesterday morning, and between that time and my appointment today to get the results, I played "what if."

I figured that even if there was another tumor in my arm, we could treat it with radiation (a drag, because you have to go in every day. But I'm an old hand at radiation, I've done it three times now). And I could make a case for staying off the chemo for awhile longer, as long as my tumor markers stayed down.

Then I'd have a reasonable summer, even if I was tied to the cancer center by a 24-hour leash.

I also fantasized that I had just exaggerated the pain and there was really nothing very seriously wrong. Haven't I had enough? More than my share?

That, however, is not an argument that works with the cancer gods.

The answer, once I saw Dr. Lee, was weirder than I could have imagined. He showed me the MRIs, explained, and said, "I really have no idea what is going on."

Oh, boy. Not good.

The MRI shows edema, or swelling, in the MARROW of the upper arm bone, the entire length of the bone. And a couple of suspicious spots that might be cancer, but don't look like the other tumors I've had in my bones.

So. We looked at each other. I asked a few distracting questions about what I was looking at on the scan while I got my breath back. Dr. Lee suggested maybe a biopsy of the bone, but that's apparently a surgical procedure.

I could see where this was heading, and I wasn't liking it.

We talked a bit more and decided that I should have all the other scans (the ones I had so blithely scheduled for early July when I was planning to have a month off from cancer) ASAP. They are all scheduled for next Monday--one long day of scans. PET/CT and lots more MRIs.

He also wants me to see another doctor, one I know because I've written about him and his patients. A big guy in the bone cancer world. Waiting for the phone call about that appointment.

And of course I've e-mailed Dr. L in Tucson and asked him to check in with Dr. Lee.

So that's what's happening.

Note: If you are new to my blog, you may not realize that I am extremely sensitive about people giving me unwanted advice. Please do not e-mail me advice. I am not looking for medical advice.

Also, please be careful with the platitudes. Don't tell me you are sure everything will be fine. You don't know that and neither do I.

Messages of support and friendship are gratefully accepted.

@ Jeanne Sather 2007.

Comments

[Lisa]

Oh Jeanne, I don't know what to say, but I am thinking about and praying for you. I am hoping that you will get good news soon, because yikes you deserve it.

Take care

[Sara]

Ugh, I'm so sorry to hear this. I was so hoping for boring.

Sadly, not boring.

Hang in there, kiddo.

[Kristina]

I just got home and went straight to your blog. I was hoping for the opposite of this. Of course I was, and you were, too.

I don't have words. I'm sorry. I wish it were different.

[Gloria]

You're in my thoughts, Jeanne, and, as soon as you feel like coming downtown for lunch, let's do it.

[Sue,from Bennettsville, SC]

Jeanne, this is my first time to ur blog, I have a friend who is fighting cancer, her first time they removed a 7 lb tumor...now she appears as if she's 9 months pregant.What can I say, I hope ur outcome is more positive than hers..shes been fighting this "monster"for one yr...they just keep coming back. At present time shes in hospital bloodclot between her heart an lung.

[Jeanne]

OK, ladies, the comments you left for me made me cry, while getting this news yesterday didn't. Thank you so much for giving me the kind of contact that works for me--no advice, no banal platitudes, just honest concern.

Thank you all, again and again.

And Sue, I am so sorry about your friend. If it helps for you to read my blog, or to correspond with me by e-mail, I'm very happy to be here for you.

A warning: I won't tell you what to do and I don't give advice. But I'm happy to listen.

Love to all, wish I could send you ripe strawberries from my garden,

Jeanne

[Teri]

Jeanne, thank you for sharing even the rawest of moments with us. I am thinking about you. Let me know if I can assume my 'ninja librarian' persona and locate some good evidence for you and your docs.

[Jeanne]

Teri--I would love to have Ninja Librarian swing into action on my behalf. Do you have throwing stars? (And you made me smile, thanks.)

Right now, I don't even know what to research, but should have a better idea next Tuesday, when I see the bone guy. And I will certainly be in touch and ask for your expertise.

I thought, briefly, about not writing about this in the moment (like maybe waiting a few days or a week), but I've gotten such great support when I've written about difficult things, like meltdowns, for example, that I decided to go ahead. And I'm glad I did.

Are you going to write a "health and happiness" post for us? Did you see the ones that are up there? You could put Ninja Librarian to work on that topic ...

Jeanne

[jessica]

gosh sakes, sally, let this girl have a moment or two! one at the very least!

all kidding aside, i'm deeply sorry, Jeanne, that you are "back at it." one just never knows, do we? and just when we think we do... my heart is just a little heavier tonight but that in no way interferes with the strength i am sending west. better put a net out front, it'll be rolling in shortly.

when there are few words to say, i am best at gently "doing." cooking, quietly picking up the house, bringing in fresh flowers, listening, folding towels, just being present. it leaves me in a bit of a predicament now... i'm just hoping that there are people around you to support in the ways that feel good. or i'll be on the next flight... (i actually kind of like Sun Country-- it wouldn't be a problem.)

we're all right here with you, Jeanne...

[Kate]

Jeanne,
Last week my tumor markers doubled. I've had them go up and down but never double. I'm ten years out with bone mets and started have back pain so I knew I was in trouble. So yesterday I did the dreaded scan and today I found out I have more bone met but the good news is it's not in soft tissue organs. Sooooo no break for me. It's Tykerb and Zelota. But my doc did tell me at the end of the year a very promising drug that targets bone mets is coming so if we can just hang tough. Jeez, it might me just what we need. I'm a wreck going thru the scans and mri's. I'll think of you and hope for the very best.

Kate in CAlifornia

[Katrina]

That sucks. Sorry, but I can't come up with better, nicer words. Cancer doesn't deserve nicer words. I hope you're ok. I wish you could send us strawberries. That part sounds so nice.

[Jennifer]

I'm with Katrina - that just plain sucks. I was so hoping you'd be able to relax and enjoy the summer without having to endure doctor's appointments and tests. Wishing you well.

[Jeanne]

Jessica, Kate, Katrina, and Jennifer--JKKJ, hum ... Thank you all. I am quietly puttering around the house: gardening, pet care, some writing. Keeping busy with low-stress things seems to help me a lot.

And getting supportive messsages like all of yours really helps as well. I know that I am not alone. I have blogging friends whom I have never met off-line but who "get it" so well, and I also have friends here in Seattle who have proved themselves time after time. They are here for me.

And personally, I think profanity works just fine when you get this kind of news.

"Sucks." "damn damn double damn" one of my friends wrote in an e-mail. And when I told my therapist, she said, "Fuck!" I loved that. Such a heartfelt response, rather than a carefully professional one.

I feel loved and needed, and that will get me through this, whatever the heck it is.

Jeanne

[Jacqueline]

Yep. This is certainly yuckful news. And fiddlyfuckin'fartz!!! comes to mind as well. But what I like is to see the words "I feel loved and needed" because that let's me know that YOU get what's behind our words. xo to you Jeanne.

[jessica]

your therapist has the right idea. i was hoping when you said "profanity" it would get better than "sucks" and "damn."

for me, its like some rite of passage when a doc swears in my presence. i rejoice. i feel comfortable. and there is no better cuss than "fuck." not one. anywhere.

[Katrina]

OK, I did censor myself quite a bit. Can I have the number of your therapist? At least a referral?

[jessica]

i'll arm wrestle ya for it, katrina... whaddaya say?

[Katrina]

Bring it Jessica...
:-)

[Jeanne]

Kate--I'm sorry, I ignored your news about more mets when I answered you the first time. Didn't mean to.

I am really sorry. And I agree with you that no mets in soft tissue is EXCELLENT news. I've been that way the whole time I've had mets--bone only. It is much easier to control.

Hang in there. And let me know what's happening if you feel like it.

Jessica and Katrina--you lost me. (I'm a little slow mentally right now.) Are you arm wrestling over the name of my therapist? Are you in Seattle?

If you are serious, I can ask her, but she may not be taking new clients right now. She's usually booked pretty full, and I've referred people to her in the past and she hasn't been able to take them on. She is wonderful though.

Jeanne

[Kristina]

I came to check on you today. I hope that your silence means that you are relaxing in your garden, and not thinking those dark thoughts that can come unbidden.

I did Race for the Cure today, and thought of you. I met a 33 year survivor, and thought of all of us. She's on her 3rd go of it, but fighting hard and hoping to win. I want to be like her.

I'm hoping that you are able to find comfort, peace and joy in the midst of all of this. A perfectly ripe strawberry, a call from a friend - I hope that your heart still rises up when you behold the treasures of your life. (Good grief, that sounds like a Hallmark card. My apologies for the bad use of Wordsworth's (?) poetry.)

[Jeanne]

Kristina==thanks for checking in on me. I haven't written any posts yet today, although a couple are perking. I did reply to a few comments and a few e-mails. Ate pancakes for lunch with my homemade jam on them--that was wonderful.

And basically jumping from project to project, mostly outside. But doing OK. Walked the older dog down to the park and ran into a huge picnic of some organization for deaf families, or families where one or more members are deaf. All the kids wanted to pet GB and ask him to shake hands over and over again, and then cuddle him when he finally calmed down enough to lie down. It was a very sweet very moments.

Then on the way home I pointed a couple of kids who were obviously new to Ravenna Park toward the "money tree"--an old tree where coins just appear in the bark every so often.

(I knew these were there because I had put them there a couple of days ago, and so far no one had found them.)

Jeanne

[laurie]

Fuck. Fuck.
I am so sorry, Jeanne. Sorry about this new question mark, and, sorry too that you won't get the break.
I am glad that you have so many people (and furry creatures) who love you and a garden that gives you joy.
I am sending out all my most positive vibes - my wish for you is that the tests bring the best possible news and that you get that break very soon, after all.

[Jeanne]

Laurie--thanks so much. I'm doing my best to keep out of the darkest depths of "what if" and really hoping that I still get that break.

If nothing else, the six weeks that I've had off treatment are helping me to cope with what is happening now. If I'd been as exhausted as I was then and had gotten hit by this ... well, it would have been a lot tougher.

Jeanne

[Willa]

Hi Jeanne,
1st time to the blog and I hope I haven't caught you at a bad time. Sounds like there's nothing to but wait and waiting sucks.

I'm recovering from a mastectomy my self and my left arm has hurt a bit since (in certain positions) but now my right arm hurts too. It's probably just coincidence but now I'm worried. I'll monitor for a few days and then see the doctor if necessary.
Can I say I think you're brave for doing radiation 3x? I suppose it's not bravery because we all do what we need to do to survive but it feels brave to me because I'm turning down radiation myself. I'm a borderline case for needing radiation and I think I'm making the right choice but I could just be chickening out.

I hope the bone specialist can shed some light on your situation so that you at least know who the enemy is.

~Willa

[Jeanne]

Willa--thanks, and welcome.

So sorry to hear about your cancer.

It's not brave to decide to do radiation or not do it. We all make the best choices for ourselves, and I've found myself terrified of something--chemo the first time, for example--but I still went ahead and did it.

On the sore arm--you're going to have a lot of these moments ahead of you, if I can give a small bit of advice. It's the way it is once you've had cancer, and you have to try to decide whether or not to "bother" the doctor about every little thing.

No. One--get over that "bother the doctor" thing if you can. That's why they get the big bucks.

No. Two--my therapist said to me a long time ago, "If you've worrying about this enough to be losing sleep over it, you need to call the doctor."

That's the guideline I still use, and it works for me. And sometimes whatever I am worrying over is nothing (swollen glands once that were just a virus that was going around), and sometimes it's something big like this new problem with my arm.

Take care, and let me know how things are going.

Jeanne