End of the good news

This is Brie. I didn't realize Sandy's last entry had been in November. We continued to feel hopeful, though the chemo started catching up with her. Her fatigue grew more severe in February and March - just about the time the CA 15 3 marker numbers started inching up.

With metastatic breast cancer, you expect the chemo to stop working at some point, and then you move to a different drug for as long as it works. So we agreed to a chemo break in April and May, which was supposed to give Sandy a chance to regain her energy before starting on a new drug. Meanwhile, she had scans, and they were all pretty okay, except the MRI of her brain showed one new small lesion. The plan shifted to include brain radiation before the new chemo - and we set off on vacation, driving through Idaho and Utah, seeing some beautiful sights.

Unfortunately, Sandy was miserable a lot of the time we were traveling - with an excruciating pain in her neck that started in mid-April (and we'd thought was part of the post-Taxol withdrawal body aches), and she was nauseated much of the time, starting the first day of vacation. When we got back, none of the docs could identify a cause for the neck pain or the nausea, and we were proceeding according to plan. Sandy was anxious to get back on chemo, with the hope that the pain would go away.

Radiation started on June 15, and it did not go according to plan. That night, she had a horrific headache and vomited frequently. We thought it was a bad migraine, but the next day, she acted like she was having a stroke. Instead of radiation, we spent the afternoon in Urgent Care, and she recovered. Complicated migraine, everyone said, and we were assured that she'd be fine continuing with radiation.

But before she'd even gotten to radiation the next day, she was confused and barely lucid - and vomiting again. Urgent Care led to the hospital, and there, a new MRI revealed that in the six weeks since her last MRI, the cancer had spread to many points in her brain and it was now clear that it was in her central nervous system, inflaming the meninges. (The neck pain, the nausea - now everyone understood them.)

We continued radiation, seeking relief from the headaches and nausea - but it was torturous. 10 nights in the hospital, and then we tried to move to outpatient radiation for the last couple of days, but ended up back in the ER with a sodium drop that left Sandy completely nonresponsive (and had me calling 911 early in the morning). A few days later, we went home with nursing care, Sandy in a bed in the living room, and her best friend, Laura, was with us to help me care for her and to spend time with her. We still thought, at that point, that we had some time - that she could have intrathecal chemo for the cancer in her central nervous system and get stronger.

On July 5, her oncologist disabused us of the notion that intrathecal chemo would help (and later, when I finally dared to look online, it was clear to me that the odds had always been bad) - and told us Sandy had just a few weeks to live. She was so weak that even if we'd wanted to try intrathecal chemo, I doubt she'd have survived the neurosurgery required to insert the port in her skull. So, in shock, we moved to hospice care, still at home. And a couple of days later, when another sodium drop and a UTI left Sandy unresponsive, we moved to Bailey Boushay, a local hospice facility. That's where Sandy spent the last ten days of her life. She died at 1:20 a.m. July 19.

The last five weeks of her life, we struggled to keep the pain down while keeping her conscious and lucid. It was a balance we rarely found. But Sandy died gracefully, summoning old friends and saying goodbye to family. She was surrounded by people who loved her that full five weeks, and especially after we moved to Bailey Boushay. She didn't want to die. In fact, she'd surprised me with her willingness to try intrathecal chemo when we first discussed it. She wanted to live. But during my last real conversation with her, early in the morning of the 17th, she'd accepted her death and was ready to go.

I remain in shock, eight weeks later, unwilling to believe she's not going to return. But I am also grateful for the life we shared, and for all the love she experienced in her life. I am comforted every time someone shares with me how much she meant to them. She wanted to be remembered. And she is.

99% good news

Got m most recent CA-15-2 score (i.e., "tumor markers" score) today. 99! Under a hundred! It was 3,000+ the first time in April, and it's consistently dropped each test since, and now it's UNDER A HUNDRED!

Context: I get a CT scan every three months. Most times, some mets are smaller; some mets are the same. Nothing has been bigger in the same place, at all. Here's this month's almost unreadable summary:

* No significant change in appearance of pulmonary nodules.
* Decreased size of retroperitoneal node.
* Decreased size of left pelvic mass.
* Stable left adrenal mass.
* Stable L5 and T2 blastic metastases

Every few months, I get an MRI as well, so they can keep watching my brain tumor, which also continues to shrink. It's about 5mm x 5mm, now, down from 13mm.

So, like I said, 99% good news. The bad news is that Dr Reddys said today that she's thinking three more months of chemo after my tumor markers are within range, (which she figures is 3-6 months away) so the end of this round of chemo is 6 to 9 months away. Which right now, seems like a very long time: Between May and August '11.

Which honestly, isn't so bad; we've done a lot to make chemo work. But my hip hurts, a lot. And I can't get cortisone shots until after chemo. I can't get surgery until months after chemo. And I'm tired of hurting. That's the 1%.

All the news these days is good news

I've had a hard time getting my oncologist to do scans. She's afraid there won't be enough change to show anything, apparently. But I finally got a full CT scan and MRI...and wow, *everything* is better. My brain tumor is less than 1/2 its previous size. My adrenal gland is back to normal; my bone mets show nearly normal density (!!YES -- THAT MEANS I CAN BIKE RIDE!!), and even the "innumerable" lung tumors have shrunk, and seem fewer.

Frankly, my oncologist seemed almost confused as she was showing us the scan detail.

Initially, she said, "you'll pretty much stay on this chemo regimen until your body can't take it any more, or it stops working." This week, she admitted there was a third possibility -- you get a break if they can't find any tumors for your chemo to work on. If that's to happen, it's another 3 or 4 'sets' of chemo away -- probably December or January, before she even considers the possibility.

But I have to say, things are looking very good right now.

Seattle finally got summer -- it lasted from Tuesday to Saturday last week, and is already over (we're looking for a high of 69 today). But it was nice; I spent a lot of time sitting in the shade in the anti-gravity chair that Mom bought me, reading my Kindle, watching plants suddenly grow (as opposed to stunt themselves in the cold).

The last three weeks have been nearly steady improvement. I loved my first "Week Without Chemo". My dizziness (did I mention my weeks of dizziness?) have become quite rare, and my crazy periods of being out of breath for little reason, are also becoming rarer.

Best of all, I just had my first tumor marker test since my diagnosis. The original test was over 3000 -- a ridiculous high result. My newest result was 1200 -- still high, of course, but less than 1/2 of what it had been only two months ago.

My other blood results: I had some anemia back in 2006 on Taxol, so we're watching my counts, but they're hard to read, at least for us non-doctor folks. They test RBCs, hematocrit, hemoglobin and other blood fractions, and some look good and others don't. But the most recent test was actually an improvement -- so we're hopeful that the lower numbers were left over from the radiation results (radiating a big bone like the femur can lower RBCs until it recovers), instead of being a Taxol result. We just need to keep an eye on it, and I need to eat some red meat each week.

I still get tired easily. My hip and knee seem to be much more painful (which may be true -- joint problems and pain are known side effects of Taxol). My hair is definitely coming out, despite my weird belief that it wasn't going to fall out this time. There are days when I get almost nothing done. But there are other days: Brie and I managed to move our huge three-bin composter; and a host of smaller projects. I need to concentrate on the things done and not the things undone.

Things are definitely good and getting better. (Some part of me feels like it's tempting fate not to put the words, "at least for now", at the end of that. How weird.)

Upcoming: I have a new MRI in two weeks, to see if the Avastin has had any effect on my brain tumor. I have a CT scan around the end of August, and x-rays on my femur in October to see how my lung and bone tumors are doing. I'll post when I know.

SSD

Just spent 2 hours filling out Social Security Disability forms online (trying vainly to remember dates of old jobs, old school, old medical tests) only to get to the end where they say, "and then print half of this stuff out and take them by your local Social Security office." Um, then why did we do them online? Does that mean they don't trust the internet?

Chemo, week 2

We have a friend, Tina, who is steadily inching out of amateur status with her photography. She took pictures of our hard-to-photograph kitties last year, and we loved them. So when I realized that I might lose my hair soon (and it might be gone for a long time), we asked if she'd be willing to take a more-or-less formal picture of us. She showed up with her fancy lights and filters and reflection umbrellas and stuff, and we had a pretty good time. Towards the end I got tired, and the last hundred pictures will just be me, lying on the couch, laughing at her and Brie. We'll post a couple here if any of them turn out.

We're…fairly happy with our care at Group Health. But there are strange holes in their coverage or procedures or something. Nutrition, for one thing, never seems to be mentioned. So we're spending our own money to see a cancer-focused naturopathic doc at Seattle Cancer Treatment and Wellness Center. Nice people, and it's great to get a second opinion on things. But when we saw them in 2006, they were literally across the street from Group Health, and now they're in RENTON. Argh. Long drive at 8:30am. Basically we're asking for stuff to make chemo less onerous, and ideas on how to support my immune system to make my body's efforts more effective. And as usual with a naturopath, they've prescribed about a million pills a day. Argh, again.

End of radiation, first week of chemo

Okay, healthwise, this week was horrible -- I had high doses of radiation on my gut up until Thursday, and then the first dose of chemo was Friday -- so my gut misery and the chemo combined into one big wretchedness.

But my family really came through. Mom, Mindy, Allison and Julia did the Relay for Life; Shelly and Lissa sent us a care package: boxes of Alaskan goodies; Mindy made me the coolest lap quilt ever -- soft, and just the right weight; Mom dispatched Collin to acquire us a new lounger, once I started spending most of my waking hours horizontal; Viv took it upon herself to make sure that my candy Fridays (cancer likes sugar -- so you're not supposed to eat it; except on chemo days, where you *want* the cancer to be active so the chemo can swat at it) were well supplied…and then Mom and Viv came by Saturday and did yeoman's work in our sadly neglected garden.

I have a good famdamly.

The last week before chemo

The last time we were at Snoqualmie Falls was during chemo back in 2006 (there are lovely hairless pictures of me further down in the blog). Before we'd known a thing about the cancer returning, we'd planned a bike weekend getaway -- working hard biking up there, rewarding ourselves spending the night and having an indulgent breakfast, and then biking home.

By the time of our reservation, the bad news had hit, and I was actually so sick we almost canceled…but hell, they're going to charge us anyway, so we figured we might as well go. Of course we didn't get to bike (grrr), but even though I occasionally felt horrible, it turned out to be a wonderful night in a luxurious room, followed by a beautiful walk along the falls.

Biopsy and MRI updates

A couple of weeks ago, we looked at the tests they'd requested, and thought: huh. They'd ordered a biopsy (yay), but it was a fine-needle aspiration, so they were able to tell it was breast cancer, (i.e.,not tuberculosis), but they weren't able to tell for sure what kind of breast cancer. And they'd ordered a bone scan, but not a brain scan.

So we pushed back, and today was results day. The biopsy was a farce; they choose my adrenal glade, which had a 4 in (10 cm.) tumor: plenty of room for clean cells, right? Nope. After three hours of my hospital time and a couple more days waiting, what they found was a lot of dead cells in my adrenal. (Ick!) And then they had nothing more to say about that, like, "but we'll keep a watch on a big tumor full of dead cells" or "don't you worry about a tumor full of dead cells -- we have a plan for them." Nothing. auck.

So, we still don't know for sure that we have triple negative -- we still don't know for sure that we're making chemo decisions based on the right information.

Also, it turns out I do have a tumor in my brain -- how cool is that. For now, it doesn't change much -- but apparently we may need to take a chemo break and try a "cyber knife" on it if the chemo doesn't shrink it.

Honestly, all of this bad news would be easier except that I've pretty much been miserable since the steroids wore off Saturday morning. Thankfully, we're seeing the oncologist tomorrow, so hopefully they'll have some ideas about how to make me feel better (before my whining leads B to terrible things).

Yup, it's back

and tomorrow's the biopsy results. Yay.