Chrysalis

No, I'm Not Dead

When I said "no news is good news," it wasn't my intention to just leave and never come back!  But Dr. Big Dog's regimen has been kicking my ass since the end of January and some days it's been all I could do to get Liam off to school before crawling back under the covers myself.

But I'm good, and life is good, and the only thing not so good is that I'm still dealing with this pesky cancer.  Waaaaay back in December a CT scan showed that one of my ureters wasn't looking too spiffy, and I had to have a procedure to have a stent put in.  Dr. G had promised me December off, then I got sick, so it was late in January when the procedure was done, but it was no biggie, just outpatient surgery.  So I basically got two months off chemo, which was wonderful.

But when I started again, well, not so much.  I am now on two new medications, one given at infusion and another that's self-administered 24 hours after chemo is over.  The first one, irinotecan, sucks sucks sucks.  The two main side effects?  Hair loss and diarrhea.  Gee, two of my favorite things.  And of course there are some others, but minor in the scheme of things, especially compared to stealth diarrhea.  And that's all I'm going to say about that.

I'm lucky to have started this whole mess with A LOT of hair.  My hair has always been really thick and I've had hairdressers through the years who jokingly threatened to charge me by the pound for a haircut.  Well, thank all the gods and little fishes for that mop, because otherwise I would be bald now.  I couldn't believe how fast I was losing it.  So I finally bit the bullet, so to speak, and cut my hair.  It has not been this short in many many moons, if ever, but I'm getting used to it and almost liking it.  The second picture was after I had scrunched it into curly submission -- it takes a LOT more product than I'm used to using.  But at least I still have some left to scrunch!

I also take Neulasta to help build up my white cells.  My platelet count is low, but it's only been low enough two times that I couldn't take chemo.  I generally go to the outpatient lab here the day before my scheduled treatment.  They fax the results to Chapel Hill and CH makes the determination on chemo; that way, I don't have to drive three hours at four dollars a gallon for nothing.

I've had several scans and my liver and lungs remain clear, praise be, with no evidence of new growth.  The more of those kinds of scan results I have, the better my chances for a good long-term prognosis.  At this point I feel like a walking miracle, so I will continue the treatments as long as my body holds up.  Dr. G told me right from the jump that he was going to push me as hard as he could, and that's what we're doing.

So I'm tired a lot, but other than that I feel pretty good, and miles better than at this time last year, when I could barely walk to the mailbox.  A lot of days I need to sleep more than I want to, and an awful lot of weekends are spent napping in my big chair, but I just try to look at it as recharging, awaiting the day that Dr. Big Dog says "you're in remission," and sends my happy ass home.

What's up with y'all?

Ragged

I can't believe I've let so much time slip by without any updates.  Thanks so much to all of you who have emailed and asked after me.  I'm still here, ragged but right, as the Possum used to say.

Wednesday I had my 14th treatment -- the seventh since my liver surgery.  I've had two CT scans in the last few months and both of them were clean, which is cause for great celebration.  Dr. Big Dog took the oxaliplatin out of my regimen because it had caused such neuropathy in my hands and toes, despite the calcium/magnesium infusions that I had.  It's weird -- the neuropathy didn't show up at all until after my surgery.  Guess they weren't kidding when they said that side effects were cumulative.  By taking oxali out of the mix, the neuropathy hasn't progressed any, but I can't say that it's gotten better.  It's not terribly painful but it is aggravating, especially in my feet.  It feels like I've always got sand between my toes.  As y'all know, I am not at all adverse to having sand between my toes, but I would much prefer to get the feeling from actually being on the beach.

My hair has thinned out a lot, but I started with very thick hair so it's not been as traumatic as it could have been.  I recently had it cut from mid-back length to just above my shoulders.  It was a vast improvement in the looks department, and the thinning seems to be slowing down, too.

Otherwise, beyond being tired nearly all the time, I'm doing great.  Some days are definitely more high-energy than others, but I have finally learned to quit beating myself up about it and listen to what my body has to say.  So I have spent a lot of time these last few months curled up in my big chair reading and napping.  Funny, I used to think that was my ideal career!  Now if I could just find someone to pay me for it.

I'm working about half-time.  Typing is harder some days than others (again, the neuropathy) and I still am not as high-speed as I was before.  Money is of course always a worry but I just do what I can do and the rest of it will have to go to hell until I get well.  And I'm getting there.

One more treatment and one more scan and then I get to take the month of December off, which will be such a blessing.  The chemo is tolerable, but the six hours on the road really wear Mama and me down.  She has been such a rock for me, but I know she's weary and can use the break.

I'll try to do better with updates.  Right now no news is definitely good news.  I appreciate your continuing prayers and support so much.

Alive

It's hard to believe that it's been nearly two months since I posted here.  Let me tell you, I wish those two months had been spent on a remote tropical island with no internet access, but instead I've spent quite a lot of time in narcotic limbo and then some more time in the exhaustion zone.  I am not completely well, but by God I'm alive and I'm feeling stronger every day.

These surgeries were not for sissies.  I was on the operating table for roughly nine hours, the time divided fairly equally between removing the tumors (which turned out to be huge) from my liver and taking down the  hated colostomy and reconnecting my plumbing (HOORAY!!).  Dr. Kim wound up taking 70 percent of my liver, which is now busy regenerating.  It's hard work.

Unfortunately, once the surgeries were done, more cancer was found in my abdominal cavity.  Dr. Kim referred to them as "nodules" and said that he is confident that he removed 98 percent of the cancer from my body.  As soon as I'm strong enough, I'll be resuming chemotherapy to rid myself of that other 2 percent.

The recovery has been brutal.  The first week in the hospital I was pretty much unconscious.  I have friends who came to visit; I have no memory whatsover of their being there.  My first memory is the Friday following the surgery -- one full week later -- when I awoke in agony due to the muscles in my shoulders still being so sore from lying in one position all those hours.  I was still heavily medicated, but they started weaning me slowly from the constant infusion of narcotics and put me on a pump.  That weekend was pretty awful.  Everyone from my mama to the nurses to the doctors were nagging me to get up and start moving around and I just didn't feel like I could do it.  Plus it was Mother's Day and I desperately missed my boy.

But on Monday I woke up feeling better.  Not good, by any stretch of the imagination, but better enough so that I could see the possibility of going home sometime in the foreseeable future.  Finally on Saturday, 19 May, they sent me home with a drain attached to my body to collect fluids and other junk from near my liver.  At one time I'd had four different drains, so one sounded pretty good, although it's been a pain in the ass.  Hopefully tomorrow it will be history.

It took me a week to stop taking round-the-clock pain meds, and another week to start feeling like I could get up and do much of anything.  My mother and my sister took turns staying with me, with my friend Deb coming for a weekend that proved to be particularly helpful. 

I had a little setback when fluid gathered around my lungs, and I wound up back in the hospital for 2 more days.  It scared the hell out of me because it was so painful, but it turned out to be fairly easy to fix and then I came home to rest.

Last week my goal was to go to Liam's end-of-school picnic, and I did.  I couldn't stay the whole time because part of it was in the broiling sun with no place to sit, but we did have lunch together and I think he was glad I went.  Between a trip to Chapel Hill, the picnic and a trip to his therapist, all on Monday and Tuesday, the rest of the week required a lot of rest, but I felt well enough for Mama to go home on Friday and I've spent the weekend completely alone!  I even drove myself a couple of places.  Big milestones, both of those, and I feel really good that I've been able to do it.

Sleep is still a problem.  I wake up way too often and Ambien is ineffective.  But starting this week it will be just me and Liam, and I wouldn't take a sleep aid anyway, so to hell with it, I guess.  I'm going to try to go back to work for a few hours this week.  I am pretty near dead broke, plus I just need to work.  And on 28 June we start moving us out of this house and into our new one.  I dread the work involved, but I am ready for the move to be behind us.  I think it's going to be a good one for us.

Meanwhile, my house is quiet, the sun is shining and it's about time for me to have a little lie-down.  Life is looking better every day.

Countdown

Three weeks between scheduling surgery and actually having it leaves a lot of time to freak out.  I have not done so.

Until today. 

Today I started the process that made it all real.  I am on a clear liquid diet until further notice.  The list of things that are allowed is longer than I would have expected, but I'm here to tell you that 24 hours after my last meal, 2 raspberry fruit-and-juice bars is not doing much to curb my appetite.  Tomorrow I'll have the added pleasure of drinking something vile to make sure that I'm completely empty so that Dr. Kim can safely operate.  Phosphasoda, yum, yum!

Today is also when I thought of every way this could go wrong, and every bad thing that could happen at my house in my absence, and really sat and thought about the fact that two days from now I will be once again going under general anesthaesia and having a portion of my body removed.

I'm scared. 

I am thrilled to pieces that this technology exists.  I'm lucky as hell to have a doctor who is tops in his field and who believes that this course of action is the right one.  I'm blessed with family and friends who are once again stepping in and helping to take care of Liam.  But I'm still scared.

But 48 hours from now this should be over, and I'll be moving on to the next phase of healing -- growing a new liver.  I'm hopeful that I will have an uneventful and relatively speedy recovery and that a few months down the road I will be done with chemo and completely cancer-free. 

Your thoughts and prayers winging their way towards Chapel Hill on Friday will be greatly appreciated.

Relay

Here's what all the cool kids were wearing Friday night at New Hanover County's Relay for Life as we took our places to walk the first lap of the relay, the Survivor's Lap.  Thousands of people lined the track, clapping and cheering for all of us as we walked.  Liam walked with me (I let him wear the medal) and we waved at folks we knew, stopping every now and then for a hug.  It was awesome in the very truest sense of that word, and very, very moving.  If you've never been applauded simply for showing up, I can tell you it's pretty fun! 

Once the initial lap was completed, we found the team from Liam's school and joined them to walk several more laps around the track.  A band was playing oldies, people were dancing around the track and it was chaotic and happy and wonderful.  Many teams went all out, with crazy headgear (I wish I had a picture of the team wearing flamingo hats), big banners, team shirts and the like.  It was the perfect way to spend an early spring evening, and I'm so glad we went, and naturally, I've already started thinking about ways to make it even more fun (and to raise more money) next year.

The best thing, I think, was seeing hundreds of people in purple survivor shirts.  Obviously, it's impossible to tell the state of many folks' health just by looking at them -- I don't "look sick," for instance -- but there were many, many people in purple who looked robust and healthy, and that was such a hopeful thing for me as I go into the next phase of my journey, and a great way to set my sights on the next milestone in my recovery.

Thanks so much to those of you who donated to our effort.  The preliminary count for the county says that there were over 4000 registered walkers who raised $542,000 for cancer research, and money is still being counted.   I'm grateful to have had a small part in this year's event.

Progress

Things are looking up!  Since my last chemo appointment I have felt pretty good.  My stamina is still not what it could be, but I'm trying to push through the fatigue as best I can.  Having Liam at home on spring break for three weeks meant that I needed to be able to be up and doing, and I was able to do just that, with a lot of rest periods in between.

The calcium/magnesium infusion is doing its job, and I've had almost no neuropathy to deal with.  I still have to be careful of the cold (I wear a glove if I have to stick my hand in the freezer, for instance), but there has been almost no random tingling in my hands, and none in my feet.  I was not too thrilled about the extra hour that the infusion tacked onto my chemo treatment, but it has been well worth it.

Yesterday I had a CT scan to see what kind of progress had been made in the last six weeks.  I was hoping for shrinkage like last time, but that didn't happen.  Dr. Big Dog said that there hadn't been much change in the size of the spots, but that they were showing up really dark on the scan, which means dead cells.  I'll take it!

The most beautiful words out of Dr. Big Dog's mouth were I think it's time to introduce you to a liver surgeon.  I nearly cried to hear that, I was so happy.  I have to give big, big props to Dr. Big Dog and his nurse, who moved heaven and earth for me to be able to meet with the surgeon yesterday.  He came over and consulted with Dr. Big Dog, looked at my scans and said that it's time to do my liver resection! 

I really like Dr. K.  He's smart, he has a sense of humor and he tells it to me straight without talking to me like I'm an idiot.  He seems to believe that he can go in through my original incision, so I won't have two big scars on my belly.  He is also cautiously optimistic that he can take down the ostomy, which makes me so happy I could scream.  He was very clear that if the surgery gets complicated, he won't do the take-down, but at least I know that it can be done; if not now, at a later time.  That is an unbelievable relief to me.

The surgery is scheduled for May 4th in Chapel Hill.  It's pretty major surgery, and Dr. K was clear that the first few days afterwards would not be much fun.  I can expect to stay anywhere from a week to ten days, and the recovery period is somewhere in the 4-6 week time frame.  Right now I'm so happy to have it scheduled that I'm not nervous, but I'm sure that will change as I get closer to the time.  As always, the logistics of having everything taken care of (ie, Liam) is more daunting than anything, but between my mama and my girlfriends, it somehow always manages to come together.

Next weekend is the New Hanover County Relay for Life and Liam and I are walking with the team from his school.  Although we have a lot of experience with the Walk to Cure Diabetes, this will be our first Relay.  My cousin, who is a cancer survivor herself, says that it's very emotional, and I expect that I'll walk with a big smile and tears running down my face.  If you feel so inclined, you can go to our fundraising page and make an online donation.  The Codington Cougars Relay Team has raised $6000 so far, and over $3000 of that was raised by the Codington students, who raided their piggy banks and brought in all their change.  I hope the adults can do at least as well!

Accumulation

Many side effects of this chemotherapy are said to be cumulative, and I got a firsthand look at that with this treatment.  It took me nearly two weeks to feel myself again after my last treatment, and I even had the added fun (not) of going to the ER for fluids for dehydration on Thursday. 

I'm not sure I actually was dehydrated, but I was so nauseated that I couldn't keep my antinausea meds down.  And I only took the Compazine because the medicine I took for the worst headache in the history of headaches made me nauseated.  So after hours of throwing up sporadically and with no relief from the WHITHOH, I called Chapel Hill to see what they suggested, and what they suggested was that I get my ass to the ER forthwith for some IV fluids and pain meds.  Several hours, one bag of fluid and one big dose of Dilaudid later, I came home. 

The best part, besides the relief from the WHITHOH?  Twelve hours of uninterrupted sleep, since Liam had gone home with his grandparents.  When I finally did wake up on Friday, I felt nearly 100 percent, and was able to enjoy the beautiful spring weekend.

After tomorrow I will be roughly halfway through my chemotherapy.  I've been lucky; the side effects have been minimal and not hideous.  I still struggle with unbelievable fatigue, and even on days when I feel pretty good  I always overestimate what I can do, which is very frustrating.  But again, minimal in the big scheme of things.  It could be so much worse.

Y'all send good thoughts towards Chapel Hill tomorrow, not just for me, but for my poor Tar Heels, too.  Their season is over in a stunning display of "couldn't buy a basket" in the last 15 minutes of play.   I couldn't believe how badly things fell apart for them.  It was painful to watch.

More seriously, Jason Ray, the mascot for the Tar Heels, is on life support after being hit by an SUV before Friday's game.  My heart is breaking for his family as they endure this senseless tragedy, and it certainly puts my piddly little problems in perspective.

Shrinkage

For years that word has been associated in my mind with a particularly fardo-inducing episode of Seinfeld, but no more.  Now it's one of the most beautiful words in the English language.  Last week's CT scan showed that the tumors in my liver have shrunk somewhere around 30 percent.

30 PERCENT SHRINKAGE.  Glorious, isn't it?

And so apparently my terrible mood after my last chemo treatment was directly related to the low-level anxiety I was feeling while I waited to have this scan.  As I've said, I honestly, truly believe that I'm going to be fine, that the chemotherapy I'm taking is doing what it's supposed to do and that some months down the road all this will be behind me.  But apparently there was something simmering under the surface, because when Dr. Big Dog showed me the results of my scan, I felt as though a three-ton boulder had been lifted from my shoulders. 

Being me, I can't just take the trouble that comes my way--I have to go looking for it, too.  And I've figured out that because I am tolerating the treatments well, because I'm not puking my guts out and losing my hair yet, some part of my little pea brain must have been thinking that the chemo was not working.  How could I feel so well, relatively speaking, if the toxic drugs were working?  And I believe that crazy notion is what had me so riled up for the 17 days between treatments.

In a fabulous display of the mind-body connection after my good report, every single thing about this treatment recovery time has been easier.  I've not been quite as tired, the calcium/magnesium is helping with the neuropathy (I still have tingly hands, but it's entirely related to cold sensitivity), and best of all, my head is in a very good place.

I'm so happy, and so very grateful.

Out of the Cave

So apparently my biggest chemo side effect is going to be this horrible black mood that overtakes me about the time I get home and lasts most of the week.  I was not fit company for anyone last week, including myself, and sadly my kid and my mother bore the brunt.  I stayed to myself as best I could, but that's not easy in a 1500-square-foot house where we're all practically on top of one another. 

Thankfully, Mama took Liam home with her for the weekend, giving me three blissfully alone days.  It was a godsend, just in time and just enough time for me to regroup and feel like myself again, and even miss him a little (a sure sign it's time for him to come home).  I am so lucky to have a mother who lives close by so that she can come hang out with me, but I really don't handle having another person in my house all that well.  It irritates the hell out of me that I'm not strong enough to take care of both Liam and myself without help (yeah, I know that's stupid), but I let her handle a lot of the Liam care so I can just rest.   The second day after treatment seems to be the hardest day, in terms of both physical and mental fatigue, and on those days I tend to hole up in my room and not talk to anyone more than is absolutely necessary.  After that I can slowly feel myself returning to what passes for normal around here these days, but it takes nearly a week to get there.

Chemo day itself is a relative breeze, if you don't count the getting up at o'dark-thirty part.  The trip is not terribly difficult; we did encounter more traffic this time, but that's about all.  Once I get to the infusion room and get settled in my assigned recliner, it's mainly just a matter of waiting.  The only physically painful part is when the nurse accesses my port, and that's over very quickly.  Then I wait for my blood work to come back, I wait for my antinausea meds to have a little time to work, and this time I waited for an infusion of calcium and magnesium that's supposed to help with the neuropathy in my hands.  The oxialiplatin takes about an hour and a half; the Avastin takes about an hour.  Then another infusion of the calc/mag, which takes about a half-hour, then the infusion pump for the 5FU is hooked up and I'm done and we're on the road home.  It's a long day, but not particularly difficult.

I explained all this to Liam, who is having a tough time.  I thought that maybe if he knew what my day was like, he could release a little of the worry, and I think it helped.  His immediate reaction was "that sounds boring!" and he's right, which is fine; I'm not looking for excitement during chemo.  And hearing that it doesn't hurt seemed to reassure him, too.  But we have a ways to go before he's really okay. 

Today we have our second appointment with the counselor, and I hope he will agree to talk to her one-on-one; last week he wouldn't.  He was more forthcoming with her than I expected, but not as much as I had hoped.  She's great with him though, and he says that he likes her, so I'm hopeful that she'll eventually be able to help him.  This is all such uncharted territory and I feel very blessed to have so many people willing to help.

I have a little extra time between treatments this time.  My doctor only sees patients on Thursdays, so instead of going for treatment on Monday and returning on Thursday, they set it up so that I will go in for my CT scan, see the doctor, then take my treatment all on Thursday.  It will be a long day, but that's so much better than having to go twice in one week. 

The CT scan will tell us how the spots on my liver are looking, and we'll discuss surgery then.  Honestly, the thought of another surgery is a little daunting, as I'm still having pain in the incision from the last one, but if that's my best option for making sure that everything is gone, that's what I'll do.  I feel fairly certain that the surgery won't be scheduled until after the next course of treatment (March 1st, 12th and 26th), but he may surprise me and go ahead and schedule it.  And who knows?  Miracles happen; the spots may be gone already!

Optimism is not my natural state; I am, after all, the daughter of a man who absolutely believed that "Murphy was an optimist."  But I feel very optimistic and even hopeful about this whole thing.  I truly believe that I'm going to be fine, and honestly, if bad moods and tingly hands are the worst I have to endure to get there, I'm in pretty good shape.  Some of the larger lessons that I'm taking away from this I think I probably could have learned in little less dramatic fashion, but apparently the universe believes that I needed to be whacked upside the head.

I can handle it.

Teach Your Children

After my initial consultation with Dr. Big Dog, I decided that I needed to sit down with Liam and explain to him what was going on.  He had had a really hard time with my extended hospital stay and I knew that there were days ahead where I would be away from him again.  So I bit the bullet and sat him down before I went back to Chapel Hill for my PET scan.

Telling your almost-eight-year-old son you have cancer is not something that is regularly covered in the parenting books; there is no What To Expect When You Expect Chemo.  Liam is a very bright child, and he is also a worrier.  So I knew that the way I framed this conversation was going to set the foundation for how he dealt with things in the months to come.  In many ways this was probably one of the most important conversations I'll ever have with him.  I didn't know what to say, I only knew that I had to be honest with him. 

So I just said it flat-out, "Mama has cancer."  Then we talked about what cancer is and how it affects your body, and the things that had already been done to kick the cancer's ass.  I explained to him about chemo, reminding him that his first-grade para-teacher had gone through chemo last year, and that she was still able to come to school and be his teacher.  I told him that my doctor was very, very smart and knew all kinds of things about how to treat cancer, and that my job for the next several months was to listen to what my doctor had to say and to follow his instructions so that I could get well.

He cried, of course.  He said, "I wish this had never happened!" about a million times-his mantra against bad, scary things (he repeated it endlessly in the ER the day he broke his arm).  I cried a little too, and we both agreed that this was very scary and sucky, but I assured him that I was going to do everything the doctors told me to do so that I would get strong and well again.   

I thought he was handling it well, until last week when I returned from Chemo No. 2.  Mama had come to meet his bus while I was in Chapel Hill, and she planned to stay with us for a few days until I felt ready to be here alone with Liam.  We are so fortunate that my mother is willing and able to come stay, but Liam was very resistant to her doing anything for him; he wanted me to do everything, even things he could do himself.  He loves her to pieces, but he was not very kind to her while she was here, which was my first clue.

Then came the call from his teacher, who said that all week he was coming in complaining of being tired, not wanting to participate in class, putting his head down on his desk.  She was finally able to get him to tell her that he was tired because he couldn't sleep at night, that he kept waking up because he was "worried about Mama."  Do I even have to tell you how my heart broke when I heard that?

I didn't want to jump right into it with him because I want him to continue to confide in his teacher, but he took the decision right out of my hands when he initiated the conversation and told me the same things he had told her.  He also told me that he likes Grandma to visit, but he doesn't want her taking care of him or me, that we can do it ourselves.  I explained to him that I was Grandma's baby just like he was my baby (even though neither of us is a baby), and that she wanted to take care of me so that I could get strong and take care of both of us again soon.  He agreed, but very grudgingly, to let Grandma help us when I needed it, but was very clear with me that he didn't like it.

He stayed home from school yesterday and really wanted to stay home today, too, and a little judicious digging uncovered the fact that "it's hard to be at school when I'm worried about you."  So we talked about how the best thing we can do right now is lead our lives as normally as possible.  I told him that this week I felt really good and strong (a bit of an exaggeration, but that's okay), and that I was going to spend the week doing what I need to do, and that I need him to do his job, which is to be a little boy who goes to school and learns cool stuff and plays with his friends.

Clearly this will be a continuing dialogue, not a one- or two-time conversation with him.  With so much of what will happen still unclear, it's hard for me to talk with him about it.  All I can do is listen to his fears, hold him close when he cries and be honest with him when he asks questions.  It doesn't seem like enough, but it's what we have now, and will have to suffice.