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.