Back at it . . .

I’m back at work now. Good lord, it’s exhausting. I started back on Friday. I haven’t even stayed in the office for a full day, and yet I spend the evening slumped on the couch.

BUT . . . the bright side is that I’m feeling good enough to go back to work!

I walked to Whole Foods from my office for lunch today. Normally a nice 20-minute round trip. I had to go SO slow, and my hip hurt so much. It’s deteriorated to the point where it’s completely interfering with daily life.

So I face a conundrum. I can attempt a bone-drilling surgery, which has a 50% success rate (IF it works, it may prevent a full hip replacement – which would be nice). But I don’t think I should do it till chemo is over. And that’ll take another two-four months. Can I handle this pain for another two-four months? Can I handle not being able to walk around?

I guess so. It’s not all that different from the pain I was experiencing last fall, and I got through that.

But Christ almighty . . . sometimes it just feels like this will never end, even though I know that this is temporary (assuming the cancer is gone and won’t come back). If the drilling doesn’t work, then we do a full-hip replacement. It sucks, but people live through it and are fully functional on the other side.

That’s kind of all I want anymore. Now that it appears I’m going to live through this, I’d like to be fully functional again. Which is a big deal! I’ve come through a lot, and giving up some functionality just might be the price I pay for my life.

But man oh man – it’d sure be nice to walk again.

An Uplifting Visit

Chris and I went to several doctors’ appointments at SCCA this morning. We started off really early, and I didn’t eat any breakfast, and took my antibiotics on an empty stomach.

Then I threw them all up in the exam room while I was talking to my oncologist, Sam. Poor guys. It was Sam, his resident Yoshe, and Chris in the room with me, and all they could do was hold my hair back and give me water and saltines (thank heavens for the endless supply of saltines at hospitals). Now I know – eat something before you take your pills.

It was SO GOOD to talk with Sam. He reminded me of what we’re fighting for, and that he doesn’t want me to dread chemo, and that I need to keep telling myself that I’m doing this to live. To LIVE. Not just to go from chemo round to chemo round, but to have a full and active life.

He’s absolutely right. I don’t want to approach my treatment from a place of fear. I don’t want to go through chemo because I’m afraid of dying – I want to do it because it’s medicine that will help me continue to live. I feel like I’ve gotten bogged down in that fearful place, lately, and it was a good reminder that that’s not how I want to live, or how I want to feel all the time.

I’m going to start swimming. I’m going to go back to work. I’m going to go with Chris to the farmers’ market each weekend. We’re going to take trips, and visit with friends and family.  I’m going to be able to stand up in the kitchen and cook excellent meals again. Because that is what my life is about. It’s not about cancer, it’s not about the fear of dying – it’s about enjoying the moments that I have right now.

I will still have low days. Days where I can’t help cook or clean or get up and go to work. But that’s okay, because my low days are times for me to slow down and enjoy the view out the window.

There is nothing for me to be afraid of except letting fear take over my life. And I won’t allow that to happen. I’ve got too much life to live.

Back at it . . .

Sorry I haven’t posted anything for a long time. I started back to work mid-April, and had to jump straight into membership drive mode (which we just wrapped up yesterday!).

And so to celebrate a successful drive, I am doing chemo today. I was worried about doing chemo in the middle of the drive (I normally do it on Thursdays), and my doctor was okay pushing it a couple days to Saturday.

Chris is with me today – he’s being pretty awesome. Chemo is getting harder and harder to come in and do. Maybe it was easier during radiation because I didn’t have to go home with a pump. Maybe it was easier because treatment was my full-time job, and now I’m back to my “normal” life and don’t want to interrupt it for more rounds of chemo. Whatever the reason, I’ve been having a hard time staying positive during these last couple rounds. Anyway – Chris is being super cheerful for me today. We decided to say that we were “going for a picnic” as our code-word for chemo, just to make it sound more fun. It’s funny how those little things help. Pretending. That our lives don’t actually revolve around the hospital.

Gah – I’m starting to tear up and that’s worrying Chris. Gotta stop.

I’m walking without a cane now. That’s pretty exciting. Even long walks I don’t take one with me. I still have a pretty bad limp, though, and that can be hard to work around. It makes walking really difficult. I feel like no matter how much improvement I make, walking never gets any easier. It’s always a struggle. But I’m going to call the orthopedist and see about what we can do to get my hip realigned. I’m not yet willing to live with this. There’s gotta be something we can do!

In the meantime – just keep moving.

The Mamm Came Out Negative!

It’s just a cyst! First test in ages that came back negative, and wow . . . that felt good.

I had my mammogram today to check that “spot” from the last scan. They didn’t see anything on the mammogram, so then I had an ultrasound. The resident came in first, and did the whole “Hmmmm . . . there’s the spot . . . hmmmmm . . . well, I’m going to go show these to my attending now.”  And then the doctor came in, glanced at it and said, “Oh, that’s just a cyst. You’re all clear!” Those student doctors – they like to make you nervous.

You know what? Breast cancer patients?  Not to minimize what they’re going through . . . but they’ve got it nice. Super nice robes, an entire floor dedicated to them with lovely little dressing (undressing) rooms, and really – mammograms aren’t that bad. I regularly have procedures done that are far more uncomfortable (and oftentimes painful). I think I got the wrong cancer. There are no walk-a-thons for rectal cancer. And if we had pins, they’d be brown, which no one wants to wear.

BUT . . . I’m not losing my hair or a breast, so in that respect I don’t envy them at all. Sigh. Cancer just sucks. And all cancers should be as well-funded as breast cancer.

The Results Are In!

I think I’m ready to talk about it now.

Dr. Whiting called Chris and I about 10:30 yesterday morning to give us the scan results. It looks like there is at least 75% less cancerous activity going on in this recent scan than in my last one (November).

WAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

So treatment seems to be working . . . that was good news. He also said that at least part of the remaining 25% is left-over dying cells and inflammation from radiation. In fact, he said its possible that I have no cancer left at all, and it would still show up looking like this on the scan. (Oh, I hope I hope I hope I hope I hope I hope I hope I hope I hope . . . repeat 5 million more times.)

Two things he wants to keep an eye on: I have a new node in my lung and I have a “spot” in my breast.

The lung: Apparently nodes are not really anything to be concerned about. Half the population has nodes in their lungs just from walking around trying to breathe our dirty air. But I’m high-risk and it wasn’t there before, so we’ll watch it.

The breast: That sucked a little more. It’s not showing cancerous activity. Could just be a cyst. I still need to get a mammogram done.

On-going treatment . . . this scan doesn’t change much in terms of on-going treatment, except that I get to keep doing infusions after I get back from my honeymoon. So here’s the plan: I’ll do intensive chemo infusions every two weeks (with the pump attached to me for 46 hours afterwards) now through the end of May. Then I get to take a little “break” and switch to taking only the oral chemo pill, so that I can be feeling and looking good for my July wedding and honeymoon. Starting in August, I go back to every two weeks intensive chemo. And we don’t know how long that will last at this point. I think, basically, my scan needs to come out totally negative. And then I’ll switch to a year of maintenance chemo, which means going back on the oral pill.

And Dr. Whiting plans on doing a full re-staging of my cancer when I’m back in August, so I assume that’s the next time I’ll get scanned.

Okay . . . that was overwhelming . . . Chris and I are going out for brunch now.

I Survived.

I survived. And it was actually much easier than last time.

It’s still a pretty bad procedure. There was an extremely uncomfortable 15 minutes where they filled up my bladder (oh yeah, I had a catheter) and I had to lay there without squirming  and feeling like I was about to explode.

But I wasn’t in pain. The last time I did this scan was in November, when I was still taking six oxycontin plus additional oxycodone to try and control the pain. I cried through the whole scan, and the nurse had to come out and stroke my hair and talk me through it. And then I went to work.

In contrast, I almost fell asleep on the table today! And the technician said that they got really good images.

My doctor called and talked to me yesterday, and said that he would call Chris and me with results Saturday morning. We’re not expecting to see no activity, although he said that he would jump up and down and give me a hug for joy if the test comes out negative. And he said that he doesn’t expect to see cancer anywhere else in my body (gulp!), and hopefully good signs of it being eradicated in my hip. I guess that’s all good. Now we wait till Saturday.

Tomorrow

Ugh. Scan is tomorrow. I really don’t want to do it. But I want to know what’s going on inside.

Stupid cancer.

Upcoming Scan

My first scan since radiation is coming up on Wednesday. It’s a PETscan (I don’t know what the acronym stands for – maybe Painful Endless Torture-device?). They’re going to shoot radioactive isotopes into my veins, I lay still for 45 minutes being calm, then they scan me (another 45-60 minutes), and those isotopes will light up all the cancer cells that are left in my body.

I have to eat a low-carb meal the night before and no jogging or lifting weights (I laughed when the nurse said that) for 24 hours before the scan. This is all to keep my blood pressure low, although they don’t explain why that’s important. Is it so the radioactivity will not make me explode? Is that a concern? Hell – if I didn’t have cancer before all these tests, I sure would have it now. Also, I am not allowed to be around pregnant women or infants for 24 hours after the scan, because I will be radioactive. The rest of the population is okay, apparently. So don’t be surprised if Chris has an extra arm or something the next time you see him.

I’m nervous for it. My brain doesn’t expect all the cancer to be gone, but the rest of me sure hopes it is. I’ve asked my doctor to call and talk to me about what his expectations are. We haven’t had that honest “well, doc, what’s my prognosis” conversation. I know they want to put me in remission, and are treating me very aggressively to do just that – but I don’t know what the odds are.

It’s strange to say that I’ve come this far without asking. Makes me feel like I’ve not done my homework as a patient. There’s so much to know, though. And whether the odds are good or bad, I don’t think I’d be more at ease knowing. There’s just no being at ease with this.

I’M DONE!!!!!!!!!!!!!!!!!!!!!!!

Ha HA!!!!!!!!!!!  I’m DONE! I’m done I’m done I’m done I’m done I’m done!!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m sitting in chemo right now celebrating the fact that radiation is over. My head’s woozy, but it blends right in with the general sense of elation. I DON’T have to come in tomorrow morning. I get to stop taking the horrid pills. I’m on a high.

We had a little party in radiation this morning. I took a cake. Hopefully I’ll be able to post some pics later on, but I’ll have to wait for my team to email them to me. Lots of hugs. Lots of good wishes.  Probably not tonight, because Bobblehead is back – but some champagne will be busting out this weekend. Chris and I have been through a LOT these last few months . . . and we’re going to celebrate the fact that it’s OVER!

The Last Week

This is it. The final stretch. I finish chemo/radiation on Wednesday.

And about time. I’ve got a huge radiation burn on my bum that is starting to make clothes uncomfortable, I’m totally exhausted, and the gastro-intestinal problems are back full force. This could not be ending any too soon for me.

I can’t believe that its almost over. I’ve been doing this for three months now. It’s my routine. I’m trying to feel nostalgic about it ending, but at the moment, with my burn hurting me, I couldn’t be more excited for the finish.

I feel like I should have done more with my time during treatment. I had all these grand plans about picking back up my French, practicing my fiddle every day, going to the gym several times a week. And really, it was a good day if I got the kitchen cleaned. It was a GREAT day if I got out for a walk on top of that. C’est la vie. Can’t go back and redo it now (thank goodness).

Chris is excited for this to end, too. Every time he sees my burn, he winces. And we’re both tired of me being tired all the time. I’ve powered through “being tired” plenty in my life, but this is an exhaustion like I’ve never experienced. Way beyond “stayed up every night during finals week.” This exhaustion . . . I have to sit down and rest after taking a shower. Walking from the bedroom or the couch to the kitchen takes a pep talk (internal monologue – “it’s not that far, Aubrey. One foot after the other – you can do it!”). But it’s slowly getting easier. I never use my cane around the apartment now, and half the time I forget to use it when I go out! Baby steps.

I am definitely going to miss my radiation team. I’m already trading email addresses with a couple of them so we can stay in touch. It’s a strange little you’re-graduating-now-go-out-and-live-your-life vibe. My pleasure, guys. I will do what I can.

If you’re wondering what’s next for me: well, treatment is not over. I’ll start doing intensive chemo every two weeks, beginning of April through, oh, mid-June probably. It’s the same chemo treatment I was on in December and January. Go in to SCCA on infusion day, get infused, they hook  me up to a chemo pump that I’ll carry with me for the next 48 hours, go back and get the pump taken off, take a break for 11 days, and do it all again. After mid-June, I’ll be going on “maintenance chemo.” They’ll be putting me back on the chemo pills. For a year. Sigh (mantra – still better than having cancer, still better than having cancer . . .).

In the meantime, I get to have a whole lot of scans done to see how things are going. My radiation doctor wants to do another MRI (I found out that he’s never done one. Which is why he pitilessly continues to make me do them). And my regular oncologist wants to do a PETscan (even worse than an MRI, if possible). So . . . we’ll just wait and see how things are going! Fingers crossed.