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!