alive and sort of well

Right. I won't waste anyone's time making excuses.


November: Not a good month for me. Still recovering from the second transplant, I was tired and pretty useless all month. Also started struggling more and more with shortness of breath, which some tests confirmed was due to reduced lung function. Got food poisoning right before Thanksgiving.


December: Went on steroids to improve lung function, and started feeling much better. December was pretty much a blur of Christmas prep. I spent a lot of time shopping, wrapping presents, and baking (and eating) cookies. I also started radiation therapy mid-month, receiving radiation to the tumor site and to my liver. Radiation not bad at all, really. The worst side effect was fatigue. Side effects from steroids on the other hand...insomnia, heartburn, leg pain which woke me up in the middle of the night were all included.


January: Finished radiation last week. Saw the cardiologist. My heart function, specifically the function of squeezing blood out of my heart to the rest of the body, has declined since last February, and this might be contributing to the shortness of breath issue.


Many pediatric cancer patients go on to experience what are called "late effects," side effects that in some cases take years to show up but can be traced to cancer treatment. Heart problems are a pretty common late effect, because a certain class of drugs commonly used in pediatric cancer is known to be toxic to the heart. Other issues might include reduced bone density or impaired fertility. Not terribly common but still far too frequent are secondary malignancies: cancers caused by the treatment of the first cancer.


Normally, a patient with disease like mine (that spread to the lungs) would receive radiation to the lungs. However, because my lungs aren't working properly right now, and with no obvious cause, they really don't want to radiate the lungs and risk causing serious and permanent harm to my lung function. We might revisit radiation to the lungs in a few months if my breathing improves. Which is unfortunate, because that is going to prevent me from saying I'm done with treatment.


Look, the thing is, I'm technically in remission, which means that there's no cancer that they can see, which is good, many millions of times better than the alternative. But you know what, remission doesn't feel safe or comfortable, not even close, and it has its own set of worries. Because it could crumble apart at any second, the next scan could show this was all just a cruel joke. And if that does happen - well look, there are no more options, I can't just tell myself that we'll try something else because there is no something else. So I know if the cancer comes back, I die. And you don't just shake that knowledge off and move on. It settles in, becomes a part of you, and shadows everything in your life so that nothing ever looks quite the same ever again.


So now I move on with my life, because I have to, but I'm afraid to do too much, as if I'm taunting the cancer, just daring it to come back. I keep hesitating to e-mail school and tell them I'll be starting, genuinely nervous that to do so would be assuming too much. I know it makes no logical sense--I'm not usually one to put stock in curses or jinxes--but it's a feeling that's very hard to shake.


And of course, after I wrote this, I had an echocardiogram which showed something near my heart which is most likely my Eustachian valve, but I need a CT or MRI to know for sure. And if it's not in fact this valve...unfortunately finishing that sentence violates my "don't think about it" rule.


Then there's the side effects, the heart and lung issues I mentioned, and then just plain being horrifically out of shape. But that and the psychological baggage attached are topics for another post, which I swear will not take three months to write. Maybe I'll commit to weekly posts for Lent, so as to prevent this procrastination disaster from occurring again...but in any case, feel free to harass me if it looks like I'm slipping.

part two

Fail.

That pretty much sums up my inability to update this blog for what, over a month? Sigh.

It's pretty embarrassing, seeing as I am now finishing the second transplant, and hoping to leave tomorrow (please please please).

The road to this second transplant was not a smooth one. A few weeks after the first transplant, I went for a CT scan and received the dismaying news that the lesions in my liver had grown in size from the last scan.

However, there had been some question about these liver lesions before, which I'm not sure I'd ever gotten the chance to mention. Only one biopsy in two surgeries had come up positive, and on the PET scans none of the CT lesions showed as positive. So there was actually some question as to whether there was any disease in the liver, despite all these lesions on CT.

As a result, my doctors decided they needed to biopsy my liver for disease. They performed a needle biopsy of one of the lesions, taking five samples.

The result? No sign of tumor, just inflammation and fibrosis. But no sign of tumor, dead or alive.

With these results, we decided to move forward with the second transplant. Which, while apparently better than my doctor expected, has definitely been much more difficult than the first. Both the immediate effects and side effects from the chemo made me feel awful, and it has been so much more difficult to tolerate isolation and being in the hospital, period.

Though it took roughly the same amount of time for the stem cells to take root and my counts to lift, and though I'll be staying here only a day or two longer than the last stay, I feel much less recovered than when I left the hospital after the first treatment. I still feel quite weak. Don't exactly see myself baking cookies after a few days at home like last time. My throat, which suffered the worst of the mucositis, is still healing, so eating, and especially eating enough, is quite the challenge.

I think I'm going to end here, with just this simple update. Obviously, there's a lot more to talk about and a lot that's happened that I should probably work through by writing it out. But it's more important for now that I just let people know what's going on, I think, not to mention that it's getting late and I am rather exhausted. I'll make it a goal to write that post once I'm home.

Go cells go

I received some very good news this morning, which is that my ANC is above 500! The ANC (absolute neutrophil count) refers to a specific type of infection-fighting white blood cell. Any number under 500 is neutropenic, which means a high risk of infection. Anything above 500 decreases the concern about infections. So while my immune system is still compromised (I'm sort of like an unvaccinated infant right now), it's now safe for me to:

a) leave the room wearing a mask to walk around the floor

b) start taking less antibiotics and other infection-preventing meds

c) begin the process to get me out here to home!

It's still going to be a few days, but the focus is now on preparing me to leave, and that's really exciting!

Not to mention, each day my counts have climbed I have felt better! My mouth healed very quickly, so much so that it's nearly normal today. Other issues are resolving at a more sedate pace, but overall every day brings with it less and less problems and pain.

This is probably by far the most cheerful post ever to this blog. Getting the news this morning has put me in an extremely good mood and I wanted to share with everyone while I'm still excited. Let's hope the next post is about going home.

Day +8

This blogging thing has really not worked out so well for me in here, has it? This is going to be a very short update, because I've tried more ambitious ones a half-dozen times with no success.

It's Day +8, meaning it's day 8 since I was infused with my stem cells. That's how we count around these parts.

I'm alive, feeling mostly decent, had some very rough spots but mostly it's gone better than I expected. Isolation's really not so bad, I keep myself entertained with relative ease. New MacBook Pro (!) helps quite a bit.

On pain meds for mucositis pain, so I'm a little bit woozy and I spend much time sleeping. But the pain's nice and under control, so that's what matters, right?

My counts may actually be starting to rebound already, I have to have more than one day in a row for us to rule out a fluke but the docs are optimistic that the boost we saw this morning is the real thing. It's pretty early for this to happen, so if it's true I'm pretty darn excited, since it means my recovery and exit times will both be on the shorter side. I could be out here for my R&R at home before the next transplant fairly soon. Plus, the higher my counts go the better I feel, which, you know, good!

I'm going to cut myself off now so you actually have a chance of seeing this published. I'll try to update again before I leave the hospital, but obviously, I make no promises. Just know that all things considered, I'm doing okay. And don't be afraid to gchat/skype with me! I won't leave them open if I'm not up for a little chatting.

well then

Um. I really didn't mean for it to take over a week to post this news, but the week slipped away from me, and suddenly here it is, Tuesday.

And tomorrow is Wednesday. Which means tomorrow afternoon I'll be making my way to the hospital in the afternoon to get a PICC line (which is like a long term IV) placed, after which I'm going to be admitted as an inpatient to prepare for the stem cell transplant procedure.

As I found out last Monday, my doctor in the transplant unit spoke with my oncologist, my surgeon, a radiologist, and who knows how many other physicians and came to the conclusion that it would be best to move forward with transplant immediately.

I have tried to write this post roughly five times now, and each time I've found myself many long paragraphs in wondering when exactly I'd be able to finish. The whys and hows of transplant are not only very complicated, they're hard to explain (at least in a nice, concise fashion). Now I have to check-in at the hospital tomorrow and I'm not even finished packing, so I really need to keep it short. I promise to provide a much longer and more thorough explanation later this week, unless of course I'm not well enough to do so.

So, this is my best attempt at a quick and easy explanation.

I am going to undergo high dose chemotherapy with peripheral blood stem cell rescue. Another way to describe this treatment is tandem autologous stem cell transplants. The first term is more accurate; the second term, however, will assist you if you want to do your own research.

The intended but not guaranteed purpose of this treatment is to kill any remaining cancer cells in my body to prevent the cancer from coming back in the future. The doctors put the odds of this working for me at about 60%.

To that purpose, I will receive extremely high dose chemo for 6 days. This chemo will destroy my bone marrow to the extent that it cannot recover by itself. Since I could not survive very long in this state, on day 8 (or day 0, in medical terms), I will receive an infusion of my own stem cells. These were collected from my blood a few months ago.

It takes about 2-3 weeks on average for the stem cells to take hold and start doing their job, which is to produce blood cells. In the meantime, all my white blood cells are dead, so I will have no immune system.

This obviously places me in a pretty dangerous position. To keep me safe until I recover my immune cells, I will go into isolation. As in, one room, lots of strict rules isolation. And while I'm stuck in that one room for 2-3 weeks (or more), trying not to expire of boredom, I'll be dealing with side effects. The mouth sores and mucositis I've already had experienced will be back, but many times worse. They expect I won't be able to eat longer than a few days after the chemo ends. I'll be carefully monitored for signs of infection, and I'll receive regular blood and platelet transfusions. However, any pain will be managed with help of a PCA, and I expect my doctors to be very much on top of my care. Even the doctors say the worst part will likely be the boredom of isolation.

After my stem cells take hold and my blood counts improve, they will scan to make sure that the treatment is working and there is no progression of disease. If the scans show no disease, I will repeat the entire process for a second transplant. Hopefully, I'll get some time at home in between, but it's hard to predict at this point.

Wow. So that's the short version. I'm going to end here, and will hopefully be back with more in a few days. For those of you fond of inquiring about my emotional state, I have a mental exercise. Imagine you have to face six grueling days of chemo, followed by 2-3 weeks stuck in the same not-so-large room. Think about how you would feel, and I imagine you'll have a good idea of how I am feeling.

(Did that come across as snarky? Sorry, but like I said, imagine how you would be doing. I'm not exactly at my best.)

Wish me luck, and the next update will be from the hospital!

of the good

Well, screw that.

I had just written a good amount of words for this post when I realized I was going about it in the worst way possible, so I've scrapped all that for another post.

See, the thing is, I have news. Of the good variety. But I was going on and on about the things leading up to my getting said news, which is just cruel to my readers. So here's the really short version: I was in the hospital for fever, got better, they let me go but did my CT scan first.

Had to wait all of the next day for the results, but when they came, they were very encouraging and with the potential to be very, very good.

No new disease. The nodule in the lung? Gone. And the liver's definitely changed. There's a possibility the tumor may have died, because it seems hypovascular - aka not getting the amount of blood flow tumors normally do. I'll have to do another PET scan to see if the latter is more than wishful thinking. But the answer to is this chemo working? is definitely a yes.

I'd love to report that I am overflowing with unbounded joy, but I'm mostly just relieved. Cautiously happy, but too tired and dazed to process. I barely dared to hope for this result. It's no guarantee for the future, but I'm going to savor this good thing while I can hold onto it.

More updates very soon, promise.

Trivia

Oh hi Children's Memorial Hospital. You know what just seems cruel? I mean, other than the fact that I am back here once again, this time for platelets. That the day hospital, where I go for infusions, is named after the Chicago White Sox.

Also, I may be a Cubs fan but the next Red Sox fan who tells me the White Sox "are not the Sox" is getting punched in the face. Fair warning.

Many of you have assumed that the need for blood/platelets means that my chemo treatment is getting delayed. Au contraire, friends, I just get the blood and platelets after my dose of chemo. This course ends tomorrow, though, so the end is in sight.

Ever wonder how I got the name for this blog? It's from a Jack's Mannequin song, "There, There Katie" which Andrew McMahon, the band's lead singer, wrote for his sister. McMahon was diagnosed with leukemia at age 22, and his sister Katie provided the stem cells for his transplant. It is a rather sad song to have feature one's name, but it is strikingly appropriate. It always makes me think of my brother, not only because he was the first to send it to me but because at its heart it is a song about the bond between brother and sister in difficult times. The particular line I used goes, "Katie, Katie I'm sorry that in your condition the sunshine's been missing, but Katie, don't believe that it isn't there."

Apparently Barney is still on television. I think he's even creepier than he was in the 90s. And yes, he still sings that freaking song.

However, I'll take Barney any day over the Disney and Nick atrocities the older kids prefer. And trust me, so would you.

I have run out of interesting things to say. Enjoy your weekends, everyone.

Bald

I find it quite amusing the way Instagram lends a faux-artistic touch to photos of the strangest things. Take, for example:

I was clearly more than a little bored today at day hospital. I'm onto the second half of my topotecan doses, but my hemoglobin had already dropped to 8.8. I hesitated yesterday about coming in from a transfusion, since 8.8 isn't so low, and at that point I was only just beginning to feel the effects of anemia. Good thing I ignored myself and scheduled the transfusion anyway, since when I woke up this morning I was struggling to get ready without losing my breath.

After getting chemo and then three units of blood (see above photo), my dad and I went out for burgers at DMK Burger Bar, since  six and a half hours at the hospital has a way of making a person hungry. The burgers were delicious, of course, but I mention dinner because it was kind of a big deal for another reason. Due to a slight communication mishap (see: story of my family's life), I had neither wig or hat with me, so to get dinner out, I'd have to go bald. And I did.

Here's the thing. It's not an easy thing to say why going bald in public places like restaurants and stores bother me. I'm not insecure about the way I look--frankly, I rather think I pull the look off. After my last bout with cancer, I returned to high school in the fall with a buzz cut's worth of hair and didn't much worry about it.

I think I've figured it out, though. For those unfamiliar with my fair city, Children's is located in Lincoln Park, right across the street from the DePaul campus. The immediate area is saturated with young adults, and it is incredibly busy at all hours of the day and night. Every damn time I drive through to the hospital, or pick up a meal in the surrounding area, I am hammered with reminders of the life I should be having right now. Wearing a wig doesn't eliminate my feelings of alienation, but I am comforted by the knowledge that I look normal enough to those around me. 

Bareheaded, though, I am constantly aware of how different I look from everyone else around me. It as if my lack of hair creates a physical separation between me and the rest of the world, like I'm watching other people live their lives from inside a very lonely fishbowl. And nowhere do I feel that more keenly in places where the "everyone elses" are the people I feel I'm supposed to be.

It's not as though these feelings have simply gone away because today I decided to say "screw it" and eat a burger in public bald-headed. But deciding to do so was me finally refusing to let these feelings change the way I live my life. And for that reason, I'll go ahead and consider this a momentous occasion.

flyaways

So many stray and scattered thoughts. It's a struggle to collect enough to put together a coherent post. I really must remember to update before chemo, this attention-span-of-a-gnat thing makes this entirely more difficult than necessary.

My platelets dragged their feet before finally doubling up over last weekend. So I started the topotecan on Tuesday, and received one-hour doses for five days. That would be until today, for those who hate a bit of math on the weekends. I now get two days off. Rinse and repeat, basically.

As for side effects, not so bad. Tiredness, of course. But the only real nausea I had was the first day, and I'm now convinced that was mostly a psychological  response to chemo. It just took my mind a day or so to catch up with my body and realize that I wasn't in fact nauseous. 

There's obviously that attention span problem. For example, I just spent the last 40 minutes getting completely distracted by joining Google+. +1 my blog posts guys, I want to be cool.

Anyhow, the point is the only day that presented any real difficulty was yesterday, but that's because during chemo I got walloped with a migraine. I subsequently spent so much of the day I never left my pajamas. Hate when that happens. I have too many summer clothes and not enough summer days to wear them, I can't just skip out on a cute outfit like that. /shallow

I feel like this is the point where I should talk about how I'm really doing, but that would require more introspection than I'm up for just this second. So let's just say that a) the brain can be a really inconvenient thing sometimes and b) there's been more good than bad.

I've been thinking about sharing a little more often on here, smaller posts like pictures and short updates on things I did, that sort of thing. Like, you know, a proper blog. That'd just be for the people who check in more regularly, and I'd only post the links to heavier, longer entries on Facebook (and Google+, obvs). While my life does feature an awful lot about cancer, it's not entirely cancercancercancer, you know? And I'm thinking it might be nice to share those parts too. Whether you guys are actually interested is another story entirely, but you'll just have to put up with me.

Block.

The writer's kind, that is. I have started this post roughly 10 times, and while I have plenty I wanted to say I can't seem to put it into words. So I'll drop those things for now so that I can provide some sort of update.

Friday I spent an entire lovely day at the hospital, getting blood and platelets. My hemoglobin and platelet count both dropped off rather dramatically between blood draws on Monday and Thursday. My white counts are also continuing their stay in the basement. Which, unfortunately and to my great frustration, means I have to delay the chemo I was scheduled to start on Monday.

I hate sitting around waiting for the next round. Not only is it frustrating to have to wait on treatment, but I also now have even more time until I find out if these new drugs are even working. And every week of recovery adds to the length of this ordeal. At this rate I'll be in treatment until 2013. The one upside is that I usually feel pretty decent during these extra weeks, so I can log some "feeling halfway like a normal person" hours. As I like to call them.

There's a not-so-small problem with feeling better, however, which is namely that it tends to make me feel like shit. Sure, physically, I feel great: I can eat, I have energy, I get out of the house. Emotionally, mentally, I'm a wreck. See, when I'm getting chemo or dealing with the side effects, 95% of my mental energies are directed to coping with pain and illness. It's actually so mentally draining I find it difficult to read books, which for me, is pretty remarkable. I sleep for 10 or more hours, and I pass out easily by 9pm.

When I'm better, on the other hand, my mind's free and clear, and there's no good or healthy way to just stop thinking. So think I do, about all the things I'd really rather not. It's not as bad as it was a few weeks ago. I'm  no longer stuck in a spiral of thoughts of the worst that could happen, and I don't cry every single time I'm alone. Sure, thoughts of "What if I don't make it?" still sneak up on me, leaving me feeling as if I've been punched in the gut. But I'm getting better at chasing those thoughts away.

It's other thoughts which haunt me more now, thoughts of past and future. For "What if I don't make it?" isn't the worst question, it's "What if I don't get to do that?" What terrifies me is that I might lose my future, and I don't think I need to explain why that fear makes me question my past. Decisions I've made and convictions I've held, all of which I was so damn sure were right at the time, seem stupid or deeply misguided. It's the regrets from the years I've had and the possibilities from the ones I've yet to that plague me on these days when I'm feeling well, bringing tears to my eyes at random moments and keeping me up at night.

It's not easy to chase these thoughts away. But I devour books, sometimes several in one day, pulling anything that looks tolerable off the library shelves, since reading offers the best respite. I jump at any chance to leave the house, to do something, anything other than sitting alone with nothing to do. Lying in my bed at night, I try to pray instead of letting my mind dwell in grim places. And I wait, because I trust that this will all get better with time.

It's not easy, but it's all I can do.

Everything different

Turn up the lights in here baby, extra bright I want y'all to see this.  Turn up the lights in here baby, you know what I need, want you to see everything, want you to see all of the lights.


It shouldn't be, I suppose. Different, that is.

But it is. I almost wrote that I've been lying to myself, but that's not quite true, and not fair. After all, it was easy for me to ignore that I was facing an approximately 40% chance of failure, much, much higher odds of failure than I have ever dealt with in my life. After all, I could check a box for all the positive prognosticators: I had the mildest previous treatment possible, no radiation, it was a long time between remission and relapse. And things were working: my tumor shrunk, surgery removed it, just another few cycles and I would have minimal disease and I could get stem cell treatment with its high rates of success. This would suck beyond telling, but at the end, I'd be fine.

Then, a CT two weeks ago, meant to clear me for stem cell, showed that the disease in my liver had grown, and worse, spread to the lung. A PET scan a week later confirmed. Chemo hasn't done a damn thing to check the disease's growth since surgery.

So no stem cell transplant for now (they know it won't work with that much residual disease), and onto another chemo regimen.

And, oh yeah, the chances of my dying from this disease? Now greater than half. How much greater, exactly, I'm far too scared to ask. All my doctor offered was that this "didn't put [me] in any immediate danger," a less-comforting-than-it-was-probably-meant-to-be statement which doesn't incline one to ask further questions. But it's not the statistics that have me so rattled. It's the roadblock, the setback, the change of course. I've been spent hundreds of hours pouring over the charts of pediatric cancer survivors, and I struggle to recall more than a few cases where those survivors had their current treatment stop working. Survivors' treatment goes smoothly, like mine did the first time around.

I've never hated my knowledge--and my need for more of it--until now. My dad today told me he had looked up the use of these new drugs in Wilms, and my response was just a look and a "Why?" because he knew I had done the exact same thing and not exactly coped well with what I found. It's impossible to not get rattled by any Wilms relapse study, because they all repeat those charming survival statistics to stress the point that more research--their research--is needed. What gets to me most, though, is the use of the word "salvage" to describe chemotherapy regimens used after the first has failed. Not to out myself as an English major or anything, but the connotations of "salvage" don't exactly warm the heart. It's not a particularly hopeful word, one that seems to imply we're just trying to save pieces from a wreck.

And God how much I wish that doesn't turn out to be true. Every damn cell in my body is hoping, pleading that the treatment I received this week works, that I can move onto stem cell, that I get to grow up for real and be a doctor and have a family and travel the world and eat at the famous restaurants I can't afford right now and just fucking live.

Yet for the first time I find myself forced to confront the very real possibility that I might not. And everything is so very, very different. I'm not quite sure it will ever be the same again.

staying vertical, and other success stories

I'm sure you're all just dying to know if I achieved any of those goals I had for last week. Of course, I now barely remember what I said those were, so I had to go back and check my last post.

Let's see...make it to choir practice. Check, and that's more than I can say for most of the choir. Attending Triduum masses? Yes. Barely made it through Saturday's Vigil, but yes. Cinnamon apple cake? Oh yes, and I'm currently mourning the fact that the leftovers didn't make it past Monday morning. Easter eggs? Not so much. But fortunately my 6-year-old cousin picked up the slack. Oh, and I'm not sure whether I can credit the popsicle trick (keep your mouth cold during chemo to prevent it from reaching your mouth) or the prescription mouthwash or God for giving me an Easter miracle, but my taste issues were resolved after two days instead of a week. Easter dinner tasted properly delicious.

Not too shabby! However, by Monday I had to take fifteen minutes to rest every time I tried the stairs up to my room and even standing made my chest heave and my heart beat so hard I swear you could hear it in the next room. I would have been concerned, except that this has a) happened before and I know the cause, and b) had been getting progressively worse over the weekend, so I was prepared. I was badly anemic, again, thanks to the propensity of chemo to attack not only white blood cells but their red friends as well. In fact, I attempted to place bets with my family and friends that I would need a blood transfusion this week, but no one would take me up on it. Sad. Instead they (one person in particular) kept me shooting that look that says "I know you are much worse off than you will admit and I am very concerned but I don't want you to bite my head off for saying something so I'm just going to keep an eye on you."

...Have I mentioned that I am just so tremendously fun to deal with when I feel terrible? 

I was entirely unsurprised, then, when my nurse called and told me my hemoglobin was at 6. For those who need a refresher, hemoglobin is the molecule inside red blood cells that binds oxygen, and your hemoglobin levels therefore are a good measure of the amount of red blood cells you have and of the function of those cells. For reference, normal women would be concerned anemic with a hemoglobin of 11. I was logging hemoglobin values in the 13ish range before treatment. 6 is very low. Hence the general concern about my staying vertical. Which I achieved largely by staying horizontal or at the least in a seated position until I was able to go in yesterday for blood transfusions. 3 units of A pos did wonders for my complexion. And my ability to breathe.

Missing you all, and wishing I could be wherever you are...as long as it's sunnier and warmer than it is here.

 

Holding

I've been feeling strangely calm about starting chemo again. I've experienced little of the dread I had anticipated. It's been so long since my last chemo that my desire to continue actually fighting this cancer has overwhelmed my apprehension at the side effects. It helps, too, that this week is Holy Week, one of my favorite times of year, and that I can look forward to a visit from a certain someone. The addition of an extra week between surgery and chemo this time around has also left me much more physically prepared to handle treatment. And I'm at least in part simply relieved I'm not starting the transplant treatments right now - that is something for which I am certainly not prepared yet.

Spring has sprung in these parts - I was stunned to see budding leaves on the trees after I was discharged from the hospital - and while my sinuses are unhappy, I am thrilled at the thought of spring flowers and warmer weather. Fresh air (or what counts for it in a city) is often a cure for the nausea and just general feeling of crappiness caused by chemo, but is really only a plausible option when said air is warm. Looking forward to being able to lie out in the backyard on a blanket, ideally while food is cooking on the grill (while I'm daydreaming about the currently unattainable, I'd also like glasses of wine or bottles of beer to be involved).

I have many perhaps entirely overly ambitious plans for the week. I'm determined to make it to choir practice (we are so unprepared for the Triduum it's not even funny - okay, actually it is pretty funny). And of course, I need to actually attend all those Triduum Masses, and by need I mean I'm not sure I could survive not going.   I also need to make my cinnamon apple cake for Easter Sunday. And dye Easter eggs, because I am in fact secretly five years old.

However, it's a very real possibility that I won't feel up to baking, or that the smell of eggs will make my stomach turn, or I might not be able to make it through choir practice after hours of chemo. I'll probably have to sit down through those Masses, even if it means I might not be able to hit those high notes on "Three Days."  But you know what's funny? I'm okay with that. Even if Easter Sunday supper rolls around and I can't stand the taste of anything on the table, I'll be okay. As long as I am able to share in the Passion and Resurrection this week, surrounded by family and friends, I'll be okay. In fact, far more than okay. I so rarely feel certainty lately, but about this I do.

Glad that's over

I'm home! Well, actually, I was released on Monday night but had to come back all day Tuesday for my second day of harvest, but this is the first day where I get to stay at home and do nothing if I so choose. Which I probably will choose seeing as all the travel the last few days has really aggravated my incision and caused my pain to flare up.

So, surgery. Surgeon removed all but the tiniest sliver of the main tumor. The tiny bit left behind was on my inferior vena cava, a major blood vessel which for obvious reasons really can't be cut into. My surgeon also removed some tissue from the liver (everything she "could feel," which is a distressing image) but to her it looked like either dead tumor or even infection (possibly formed from the death of tumor cells). So, overall, pretty successful.

I believe on Facebook I referred to pain control as a struggle. There is this drug, Narcan, that they often give with narcotics to reduce side effects like itching and nausea. I've had it in the past without problems. However, when they administered the drug this time, it counteracted ALL the effects of my narcotics. That would be including the painkilling ones. Cue horrific pain and me making these lovely keening noises on every exhale, probably terrifying everyone else in the recovery room. They took me off the Narcan, but only a few hours later they would try the drug again, thinking that the first incident was a fluke. It wasn't. That time I made them take me off the Narcan and I absolutely refused to take it the rest of the hospital stay. That was not actually the end of my pain control struggles, but I'm tired of talking about it and let's just say it took well into the next evening before I was able to get comfortable.

I spent another few days being sad because no one would let me have water (let alone food) and hitting that PCA button for pain meds like it was my job. Monday I had the first day of stem cell harvest, which was a bizarre and often uncomfortable experience. One of the IVs uses this rather large steel needle and once it's in you can't bend your arm at all. You only have so much slack in the tubing which connects you to the machine, so you're also pretty much confined to bed the entire time. Not so bad on Monday, when I was able to sleep, but Tuesday my fidgety-ness got the best of me and I pulled out the needle slightly. Oops. However, good news is that I collected double the amount of stem cells I needed to, so I won't have to repeat the process!

I was free to go home after Monday's harvest, so I've been at home since, mostly focusing on eating as much food as possible in the next few days. I start chemo again on Monday, and I'll be receiving doxorubicin again, which is a) just a really nasty drug and b) ruins my taste for a solid week. Just crossing my fingers that my tastebuds will be at least somewhat recovered by Easter, but I figure if it's not I'll just grab lots of leftovers and hold myself a little Easter feast a few days later. (See, sometimes I am capable of optimism! It happens!)

That's all for now - maybe another post before Monday, but I just wanted to update everyone since I've been getting asked a lot how I'm doing. Off to lunch! (Really not kidding about the eating as much as possible.)

oops

Totally meant to update here before two weeks had passed. Fortunately, it's mostly because my counts finally rebounded and I've been actually able to do things like leave the house and go to dinners and a movie and even a Bulls game (hi Cathy!).

Of course, the only reason I've been allowed to enjoy these high counts, chemo free days is because my doctors need to keep me well for surgery. Which is on Wednesday. The primary tumor is now small enough that my surgeon can remove it safely. Which is obviously a good thing, but I'm admittedly less than thrilled about being cut open again.

As I recover from surgery, they'll administer a drug to increase the production of my white blood stem cells and push them out of my bone marrow into the bloodstream. After a few days, I'll be ready for the peripheral stem cell harvest. For about eight hours over the course of one and very possibly two days, my blood will go out one arm, into a machine which separates out my stem cells, and back into my other arm. Fun, right?

After harvest, at which point I will presumably be allowed to leave the hospital, I will continue with the chemo I've been getting. I'm hoping this time I'll be a little more prepared to handle the side effects, but of course, there's a reason I refer to the effects of chemo as "side effect roulette." There's no guarantee one course's side effects will be the same as the next.

Ten times out of ten, when someone asks me how I'm doing, I dodge the question, answering only about my physical welfare. Nine times out of ten, you all let me get away with it, but every once in awhile one of you will push me for a real answer. It happened last night, when someone very close to me asked, and I was struck not by an unwillingness but an inability to answer the question. The first response that occurred to me was "I don't know," and truly, I didn't.

It is easy - perhaps far too easy - for me to compartmentalize any feelings of fear, anger, worry, and sadness so that I never have to think about them. It is both a coping and a defense mechanism, and a way of protecting those I love. While in some ways I need to compartmentalize to function (being a crying mess all the time wouldn't help me much), I worry sometimes that in never letting myself stop and think long enough to truly care that I'm closing myself off too much. I know it's affected my faith life negatively (can't pray very well if you're not willing to be open and reflect every once in awhile). And maybe it's just feeling tired and sick and being sick and fucking tired of how little energy I have, but it often feels like I'm losing my capabilities to feel in the way I used to. And yet still I'm tempted to erase these last two paragraphs and just post the facts: counts up, surgery tomorrow morning, harvest. But I will steel myself and post this anyway because it's a step forward and it's honest and I owe it to myself (and to you all for caring about me) to be honest.

it's hard to write on narcotics

so this is going to be really short. longer post about my latest adventure at the hospital later.

thursday morning, white cells practically non-existent and platelets plunged as well. thursday night, spiked a fever. 102. made my way to ER as is standard procedure.

blood cultures, antibiotics of many stripes, chest x-ray, viral swab, etc., etc., etc. somewhere in there I start to realize my mouth is starting to hurt like a bitch. ask for advil. platelets make docs say no; pain gets worse; I get narcotics instead.

cycle through chills and fever until Saturday. mouth pain gets progressively worse. I have oral mucositis, which is a deceptively friendly sounding term for mouth sores and inflammation turning your mouth into an abyss of pain. Eating got progressively harder; mostly liquid diet right now until chewing becomes easier. 

long story short, nasty little episode with pain team, eventually get a PCA (look it up please), pain is much more controlled.

counts still not going anywhere. had to give me blood today because hemoglobin dropped again and I'm having anomalous cardiac symptoms (aka weird heartbeat issues but my heart has been worked up twice in a week and every cardiologist ever says I'm fine) which might just be because anemia like the last time with the shortness of breath. which I never got to blogging about since I was readmitted two days later. fml.

did some art therapy! watercolors! watched NCAA and movies.

this probably sounds miserable and cranky and etc but I've been fighting drug induced sleep this whole time to make these sentences. pain is better controlled and I think my mouth improved but more updates tomorrow. letting drugs win now love you all.

Brought to you by hospital wifi...

Chemo's on for this week. I already knew my counts were up, since I had to make a quick Saturday trip to the ER to get an infection in my surgical wound checked out. Higher counts and a lack of fever or systemic infection saved me from spending the night at the hospital, but I still had to spend four hours letting surgery prod me before they decided I was safe to go home on antibiotics. I suspect surgeons sometimes forget that their conscious patients are going to feel and react to pain.

Anyhow, counts are up and surgery gave the go-ahead, so I will be receiving chemo this weekend with etoposide and cytoxan, five days. Unfortunately, this round can't be received at home, so I'll be enjoying hours in day hospital every day this week. And by enjoying I mean trying not to cry and/or break things. I almost did the former after sitting in the waiting room for over an hour.

Now I'm actually in day hospital. I ordered froot loops for lunch, because I saw a little girl a third my age munching on a bag and it seemed like a great idea. Oooh and there's that lovely wave of crappiness I get during every cytoxan infusion.

The doctor just dropped by and informed me the main tumor has decreased in size by 50%. Turns out the reason she did an ultrasound so early was to document a response so she can move forward with plans for eventual stem cell harvest and transplant. 

Oh look time for more science. What is a stem cell transplant?  A stem cell transplant is a transplant of bone marrow given after either intensive chemotherapy or total body irradiation. The logic of stem cell transplant seems frankly insane outside of the context of oncology. First, the doctors need to harvest bone marrow by using to drugs to amp up the production of the patient's or the donor's white blood cells (which are produced in the marrow) and then collecting those cells from the body. Then, they more or less attempt to destroy the patient's existing bone marrow with high dose chemotherapy, total body irradiation, or both. Obviously, this brings the patient close to a state one might call death. Doctors then "rescue" the patient by transplanting the previously collected marrow stem cells.

Your next question might be, why the hell would they ever do that? Well, some cancers infect the bone marrow, so the goal of a transplant is to replace cancerous with healthy marrow. These patients have to receive donated marrow. In cases like mine, the goal is to give the really aggressive chemo and/or radiation without subsequently killing the patient. My doctor went fishing in the records for other cases like mine and thinks evidence warrants this kind of treatment for me.

So the current and as always subject to change plan is to get a CT in around 2 1/2 weeks and if that checks out move forward with surgery to remove the rest of the tumor and then harvest my stem cells while I'm recovering from surgery. I know, sounds so fun you want to sign up, too!

An aside before I give up writing and succumb to a nap: all these little sick kids need to stop breaking my heart. The little guy next to me was sobbing in terror when they were placing his IV and then when asked about lunch whispers "strawberry jell-o" in his thick accent. Too much. Just too much.

Buzz Cut

Yes, that would be the top of my head. I really did not want to let go of my hair, but it was clearly starting to fall out so I bit the bullet and went for the buzz.

At sixteen, I was completely blind-sided by the hair loss. They told me 3 weeks, and it took a little less than a week. I also assumed the process would occur fairly slowly. Instead, my hair came out in clumps and even touching it would cause it to fall into my hands. It was the single most traumatic experience to come out of six months of cancer treatment.

(90s throwback: ever see The Craft? When one of the teen witches makes that girl's hair fall out? That's basically what happened. Yeah)

Taking control over my hair loss proved significantly less traumatic. But I can't lie and act as if this doesn't bother me.

It does. It makes me want to scream and cry and throw things across the room. Cancer has already stolen so much from me, and it seems patently and unnecessarily unfair that it steal my hair as well. Losing my hair robs me of confidence and a sense of femininity, as well as that ever so simple but incredibly important pleasure of feeling pretty.

With hair still attached, I could look to the rest of the world as if nothing was wrong. My scars are all hidden under clothing, and enough makeup can hide the pallor of my skin when I'm not feeling so well. But with my hair gone, I look like a cancer patient. And I really don't care that that's what I am. It's not something I want to own. I sure as hell don't want anyone, whether I know them or not, looking at me and thinking, "Oh, she must have cancer." It's not about being judged; it's about knowing all too well that when that happens all people can see or think of is cancer.

It's funny, because I started this post last week when I was feeling fairly perky enough to go out and about and thinking I was ready to get back to work. Losing my hair was my biggest frustration. Then, over the weekend, I was surprised to find myself taking a turn for the worse. Three migraines in three days, the pain at my incision site felt worse, I couldn't sleep, and I generally felt like curling up in a ball and being miserable. It was a relief to get the call on Monday after my vincristine dose and blood draw that my white blood cell count was extremely low. Suddenly everything made a lot more sense.

Since every person I've told this to has subsequently asked "What does that mean?" and "What can they do about that?" I'll try to answer those questions. White blood cells (which actually consistent of a few different cell types) are often very susceptible to chemo, and in leukemia, that's kind of the point, where in other cancers it's more of a nasty side effect. White blood cells do pretty much everything for your immune system, so not having very many of them means that I am susceptible to general feelings of crappiness, slowed healing, and a whole bunch of other fun things, the most serious of which is being one giant walking infection risk.

This leads to paranoid exchanges like the following with my father:
Me: Hey dad, I got a paper cut, do you think you could grab me a band-aid?
Dad: What? How did you do that??
Me: ........
Dad: Oh. Right.

As for what doctors can do about my low counts, right now, just wait for them to recover on their own. My monocyte (basically baby white blood cells) level is high, so they seem to be trying. If they don't recover next Monday, we'll have to delay chemo by a week. Then right after my next chemo they'll give me a drug which drives the division and maturation of white blood cells to help my body out. For now, I'll just have to wait it out -- and make everyone who comes to my house wear face masks for kicks.

Struggle.

So I keep trying to update here and failing. It's not a well-known or well-studied side effect but any cancer patient can tell you about "chemo brain." Things start to feel a little fuzzy and for me it becomes very difficult to focus on tasks for more than five minutes at a time. So. I think I'm going to try to keep this as short/to-the-point as possible. (And will likely fail miserably.)

Surgery. Sigh. It ended with the most frustrating possible outcome. My surgeon wasn't able to remove the tumor safely, but she also couldn't access the biopsy sites with just a scope. So she had to make a full incision just to take biopsies. Which, if you've been following along carefully at home, you'll know means that in a few months I will have to another full surgery for the resection of the tumor. Which, to put it delicately, sucks. (What? Trust me, in my head I had many less delicate things to say.)

Pain management's effort was less than stellar. I'm starting to suspect that I have a resistance to some of these lovely opioid drugs, because the team's first try at my hydromorphone dosing by weight and height Thursday night was an abject failure and they eventually ended up pushing me to the maximum allowed dose just to make my pain tolerable. The anesthesiologist came to apologize to me the next morning.

Rest of my hospital stay was...well, a hospital stay. Mostly uncomfortable, although I got lucky and my roommate cleared out on Friday, leaving me with a single for the weekend. Probably for the best, as I was this close to whacking my roommate's mother over the head with my IV pole. Inflicting Dr. Phil on another person against their will should qualify as torture.

Monday, I received my first chemo dose at the hospital with three drugs: vincristine, adriamycin, and cytoxan. I'll talk more about the chemo in detail once my brain recovers from said chemo. Once chemo was finished Monday night and the nurses were convinced I wasn't going to fall over, they let me go home.

Chemo continued with just cytoxan on Tuesday and Wednesday. I'm feeling quite a bit better now, but my mouth is plagued with this awful chemical-y/metallic-y taste that makes eating a trial. More on chemo in my next post!

Oh, and I would be remiss if I didn't thank everyone for the prayers, gifts, cards, well-wishes, and help. So thank you so very much for brightening my days and making life a little easier.

Science.

Surgery on Thursday, 11:30 am. Finally had the date confirmed, and as much as I dread the start of treatment this indeterminate waiting has been worse.

In the meantime, I thought I would take the opportunity to provide a bit more background about my disease and treatment. For those with front-row seats for my first go-round, you probably already know all you need or want to. But I know many others have questions and that many also are fortunate enough to not possess intimate knowledge of oncology.

At age 16, I was diagnosed with Wilms tumor, a cancer of the kidney most common in childhood. It's named Wilms after the German surgeon who first documented cases of the tumor; it can also be called nephroblastoma. I had a radical nephrectomy, meaning that I had my right kidney and some of the surrounding lymph nodes and other tissue removed. It's not often that a cause for cancers can be easily identified, but in my case, this tumor is linked to my hemihypertrophy. Hemihypertrophy is a congenital condition (congenital means that it's caused by a mutation in the genes present at birth but not inherited) which cause one side of my body to grow faster than the other. My right side is about half an inch longer than the left. I may or may not be guilty of using this fact to get points on an orientation week scavenger hunt.

Hemihypertrophy causes an increased risk for Wilms. However, most of these linked tumors show up by age 6. I had ultrasounds every year until age 9 to screen for kidney tumors. My original diagnosis at 16 was very much out of the ordinary. More than one doctor has referred to it as "so strange." (Very comforting, guys. Really.)

After my kidney and the accompanying tumor were removed, I endured five months of chemotherapy. I always found it rather ironic that the cancer itself never made me feel sick; that honor belonged solely to chemo. You'll plenty more about chemo in the future, but for now just realize that the vast majority of chemotherapy agents are poisons. They are poisons directed at functions of the cell hyperactive in cancer cells but still present in many normal cells. You may have heard of targeted therapies, which aim at abnormal features only found on cancer cells. However, very few such therapies are available, and almost none regularly in use in childhood cancers, so I won't be receiving any such drugs.

After chemotherapy, I had five and a half years of clean scans and blood tests, with no evidence of cancer. Two weeks ago, I went in for a yearly scan. Much to my shock, the ultrasound wasn't normal, with a mass growing in the spot where my right kidney used to be. I went immediately for a CT scan, which found three lesions in the liver as well. Without a biopsy, it is impossible to say with certainty this is the same tumor. But the location, coupled with the fact that it is simply statistically very unlikely that I would have a second cancer, leads my doctors to believe this is indeed a recurrence of the same Wilms tumor.

So, what does this mean for me? It begins with the surgery this Thursday. The procedure will begin laparoscopically, which means the surgeon will make a small incision and use a scope to examine the tumor. The main mass is sitting on the inferior vena cava, which is the big vein into which all the smaller veins and capillaries of the lower body flow into before entering the heart. Imaging studies couldn't get a clear enough picture of whether the tumor has invaded the vena cava (which would make it safer to treat before the full surgery) or is just compressing it. If the surgeon decides that it's the latter and that a resection at this time is possible, she'll make the full incision and remove the mass as well as what she can from the liver. If not, they'll use the scope to take biopsies and get out of there. I won't know until I wake up from anesthesia which procedure occurred.

(Hopefully this time they'll put me on the proper amount of morphine and I'll be doped up enough not to care. Last time, I came out of anesthesia and started screaming and crying in pain until the docs came skidding into the room and doubled my morphine.)

After surgery, I'll start chemotherapy. Knowing my oncologist, she'll want me to start chemo by early next week. Somewhere in the middle of chemo, I'll be receiving radiation therapy, and if they can't do surgery now, a full resection of the tumor. I'll know much more once I have surgery and actually get started on treatment.

I'll try to update here as soon as  possible after surgery, but if it is in fact the full surgery I'll probably be too doped up to manage that until Friday. I'll try to make sure my father updates my Facebook for me as soon as I'm out of the OR, but he rarely uses his own Facebook so we'll see how that goes. Pray for me/wish me luck/please don't send me flowers because I'm allergic!

This Can't Be Happening

And yet I know that it is. I know it with a certainty that suffocates me, leaving me gasping for air though  my muscles haven’t moved.

But this wasn’t supposed to happen. It sounds trite, I know, but it wasn’t. I had been granted that tantalizing word, cured, and why shouldn’t I take it? I had passed the magic number, five. Hell, only a few days ago I had marked six years since diagnosis. I was a cancer survivor.

For while I am writing to tell the story of now, this is equally much the story of then. Then was six years ago, the middle of my junior year of high school, not even half past age sixteen. It was the opening day of “Hell Week” for our drama production, but instead of practicing my small chorus part I was sitting in an emergency room, sobbing as a doctor informed me my CT scan had located a large tumor on my right kidney.

The surgical removal of my kidney and five months of chemotherapy followed. I lost my hair, the nerve function in my ankles, and my appetite. I like to think I clung to my  dignity. I certainly held fast to my stubbornness, refusing to drop out and finish the semester in summer school.

And then it was over. Cancer gone, treatment complete. Each subsequent scan caused less and less anxiety.  When I walked into this year’s follow-up visit, my biggest concern was the splitting headache caused by a morning migraine. I welcomed the ultrasound as a chance to sit in a dark and quiet room.

I waited patiently after the test for the tech to dismiss me, but when she instead told me my oncologist was on the phone, my stomach dropped. I was crying before the phone made it to my ear. My doctor’s words only confirmed what I already knew: my ultrasound wasn’t normal.

This can’t be happening.  This can’t be fucking happening. I  skipped straight past anger into denial, my head swimming as it struggled to comprehend an event which I had honestly and firmly believed could not happen.

But it is happening. I have cancer. Again. So I figure this time I might as well write about it. Partly out of convenience, since my friends are scattered across the country and sending individual updates is neither practical nor much fun. But mostly, I love to write and have had so few chances to do so (at least on topics that weren't 19th century British literature). Moreover, part of me wants to know that somewhere in all this turmoil, my voice is heard. I want to be more than just my disease and its treatments to those who know me as well as those who don't.

I promised a certain friend I would try to keep this blog as light-hearted as possible. You can also anticipate inappropriate and off-color humor, as well as more swearing than most people would find strictly (or at all) necessary. However, those who know me already know better than to expect anything else.


I believe that this more than suffices as a first post, don't you?