Sunday, May 26, 2013

Recovery is Slow; Steady

We've passed the two-weeks-after-last-treatment mark, which feels like a big deal. The doctor said that I'd be on medication for "one to two weeks after the last treatment." I've been trying - and failing, miserably - to come off nausea medication, but I'm taking much less than I was a week ago. I've finally taken some action - bought fancy French creme with the help of a dear friend and a dear pharmacist with a florescent pink scarf and matching florescent pink streak in her hair - to deal with my continuing bathroom woes.

But my brain is coming back. Thanks to walks and fresh air.

the walnut trees are just starting to show leaves
the size of road I prefer
the size of town I prefer
so green

The sun is out today so we're going to enjoy it. I'm glad I can.

a view from the grass
the church at sunset (view from our bedroom window)

Monday, May 13, 2013

Relief and Suffering

Well it's over, for now. My bits are not happy and in full panic mode and my guts are achey and uncooperative, but at least it's not going to get any worse.

I had another attack of the killer knee pain, this time probably because I was trying to get off the fortecortin for good. It took 1800mg of ibuprofen plus 200mg of Tramal (synthetic opiate) over the course of about 3 hours to get it to go away. But that did it and I fell back asleep at about 7:30am, after Joshua had gone out for cash and prepared to get me to the hospital. Great way to spend a Saturday morning. We both slept until about 11am after that, and I spent the entire day in bed, mostly sleeping. Sunday wasn't very different in terms of time in bed, but I didn't have any more pain. My face is returning to it's normal shape. Boy was I puffy for a while there.

Today we made it to the hospital for my final blood draw and then we did a second errand (!) and went to my gynecologist's office and got me my prescriptions for the next couple of weeks. Big day.

We're trying to wrap things up here in Berlin because next weekend we're escaping to the French countryside where our generous and loving friends are going to take us in and let us recuperate in their hammock. Some time in the quiet green of rural SW France with friends and a happy baby is just what the patient needs and we are so grateful to be able to go. Night train to paradise for two, please.

In about a month we have to see all the doctors again, so we'll be in Berlin again for the first couple of weeks of June. Once that's dealt with we're going to spend a few days in the German countryside with our good friends whose farm we sat last summer. Some time with goats and both kinds of kids running around, not to mention farm fresh veggies and eggs... mmmm. And then it's off to Zurich for a two month house sit in one of our favorite places.

So many wonderful things to look forward to. I can't wait to have the energy to enjoy it all. Soon... I'm gonna feel better soon.

An aside, this clip really speaks to me but I'd be hard pressed to tell you exactly why. If I figure it out, I'll let you know. But it made me laugh and feel right.

Wednesday, May 8, 2013

Not a Gout Attack!

Mysterious knee pain remains a mystery. I have had rather unusually low levels of uric acid in my blood over the past few weeks - which makes sense considering my diet. So my befuddled doctor is still befuddled. He doesn't believe it is a withdrawal symptom from the fortecortin, which seems like the obvious thing to me. I haven't had any more knee pain, so there's that. In any case, he's taking me off that stuff, ramping down over the end of the week and hopefully no more problems. He finally noticed that my face is all puffy, something that started right after the final chemo treatment over 2 weeks ago. He was a bit concerned about it, thinks it's water retention (adema), but said it could be a minor allergic reaction to fortecortin. I'll be glad to be off this stuff.

Just to make sure I'm still part medication, he added 600mg of ibuprofen three times per day AND a synthetic morphine-like opiate twice a day. Five pills for breakfast, three for lunch, and five for dinner. Knee pain will probably not be a problem again. It's all supposed to be helping with my inflammation pains, too, but it still hurts to go to the bathroom. Maybe a little less than before. 

But the bottom line right now is that I feel pretty good. I feel like my body needs a lot of work and care, but knowing I just have one more radiation on Friday and after that can focus completely on recovering from treatment makes it feel like things are only going to get better. Talk about a treatment that feels worse than the disease. 

The sun is out, the trees are green, I have the energy to go walking about in the lovely warm weather, what more could I possibly want in life?

Monday, May 6, 2013

Gout Attack!

Okay, I haven't had a confirmation that it was an actual attack of gout, but that is what my doctor is calling it. This morning before 6am I woke up with awful, tear-inducing pain in my knees. I had been one pill short the day before and had saved the last for this morning (before my return to the hospital and all the meds I want), but apparently taking two fortecortin (cortico-steriods) instead of three yesterday was a big mistake. I took that third one in the morning, knowing I'd need it, but it was too little, too late.

We thought perhaps it was withdrawal symptoms, seeing as I've been on this crap for three or four weeks now. But the doctor was not convinced. He thinks gout. He thinks it will be very interesting if it is gout. He asked me if I have been eating a lot of meat. Riiiight. He's giving me more of this mellow morphine to take as a pain killer against the devastatingly painful bathroom experiences I'm having. Plus I'll take ibuprofen. All I want is to stop with the pills, but we're adding more this week in an effort to help me suffer just a little less.

The doctor is also happy to tell me that besides the pain of the morning, if it's gout they'll be able to continue to treat the symptoms and after radiation is all over and my body recovers, I'll be just fine. My poor body.

Just another reminder of how bad it has to get for the rest of my body before the cancer cells just up and die. The cancer cells are the vulnerable ones, but they're not the only vulnerable ones. I just have to suck it up and suffer, knowing that the cancer cells (if there really are any left at this point) are suffering way worse than I am. Yeah.

Had the final CyberKnife experience today. They loaded me up with mellow morphines and some pain killers, but it still hurt getting gauzed again. The doc who did it this time was like, 'I can handle your screams, so if you want me to just continue and do it fast, I will.' I told her to go for it, and no I didn't exactly scream. But I squeezed the nurses hands very tightly.

Then it was floaty-time in the music and colors and I felt good afterwards, all loopy and sedated.

Of course, I was wrong about this being my absolute last treatment. I assumed that CyberKnife was the last step, but it turns out I still have three more normal radiation sessions this week. I stay in the hospital tonight (last overnight!), get radiated tomorrow, go home, then come back for day visits on Weds and Fri. And THEN I will actually be done with treatment. Let the healing and recovery begin.

Radiation treatment doesn't exactly stop when the sessions stop. I'll still be radioactive or something for another 6 weeks after Friday. Not that I pose a threat to others. But we'll come back for testing again after 6 weeks to have a look and see how everything is doing. Maybe an MRI, gynecological exam, Pap smear. Gotta keep looking.

Right now I'm ecstatic with the knowledge that I won't have to get stuffed full of gauze again. The worst is over. There's no more worst. No more terrible or bad, even. Just pain management and then the inevitable ramping down from something like 15 pills a day to none. My oh my.

Wednesday, May 1, 2013

Le CyberKnife

In general, radiation has been, you know, cool. I have had very few side effects until the last week and the actual administration of the radiation is totally painless. I wander in without pants and wearing plastic booties over my socks, lie down on the table with it's knee pillow and foot and head rests, and the radiology ladies roll and nudge me until my x-marks-the-spot stickers line up with the lasers coming from the ceiling and walls. Then into the tube I go for a cool and relaxing semi-nap. I've been imagining that the clacking from the machine is a handful of horses running around and stomping out bulging eyed cancer cells while being kept away from my uterus by wooden fences.

This week radiation got really good. The CyberKnife is totally as radical as you could ever imagine. It is a gigantic robot arm that reminds me of Gypsy from MST3K (but all white, at least eight feet tall, and bulky - pretty good image here). The doctors are all very pleased with the planning CT and MRI matching and they seem to be kind of excited to be able to justify the CyberKnife. The justification, for the insurance company, is 'compassionate use'. Because why irradiate my whole vagina when they can use this super precision machine and spare the healthy tissue as much as possible? The alternative, as I think I wrote before, would be brachytherapy - pen-style, focused radiation that can really only point in one direction.

Ah but the CyberKnife and it's joints and tubes - marvel of engineering and much like a giant dog sniffing around to get at you from all the angles. The treatment part lasted 50 minutes, with the giant arm and nose moving around me in a kind of full-circle, two times. It moves, making a very soft machine winding noise, points at my crotch, then stops for a few moments. Then adjusts again for another angle, pauses, moves on. When it started, I had the urge to giggle a lot.

The room itself is in a bunker under the hospital, which had to be specially made to keep the high radiation from wandering around. There's a large circular recess in the ceiling lined with multi-color LEDs that fade from bright pink to red to yellow to green to blue to purple - just like in a cheesy hot tub. And to top it all off they pipe in some very synth piano/harp/clarinet/guitar plinking music. My favorite song was the one with the birds chirping in the background. They said I can bring my own music next time if I'd like, but somehow I don't think the mood could really get any better.

The big downside is the vaginal packing - ugh. Cream soaked gauze is still abrasive and this being the third time in a week, it was pretty painful. Dr. Marnitz asked if I wanted to stop and use an analgesic, but I asked if we were past halfway and she said yes - so I said we should just get through it. Friday, next session, she'll bring something to numb me a bit. Still feeling raw and sore the day after. The radiation dries things out anyway, so it's no surprise that almost three meters of gauze being rubbed along the vaginal wall is uncomfortable.

And of course I had to go pee halfway through. I thought they were almost done, because they came in to look at something and it seemed like the CyberKnife had made a full rotation. If I'd known it was only halfway I might have said something sooner. When it really was finished I was like, 'Ich muss jetzt nach toilette gehen. Jetzt." And they were like, 'do you want to put your pants on?' And I said no no no, just get me to the bathroom.

It was funny. Kind of. They told me I should have raised my hand, as instructed, and they would have given me a break. Yeah, okay, next time that is absolutely what I will do. I just thought about all the gauze and the three adjustments they made while they lined me up just right and I was like, 'I can make it through.' Poor reasoning. Never make decisions when you have to go pee - just go pee.

Today I really do feel better than I have in about 6 weeks. Still on many anti-nausea meds, but they are working and I am eating. I have the energy to think, listen, and even hold a conversation for longer than 2 minutes today. My sense of humor may be coming back. One normal radiation tomorrow and two more CyberKnifings on Friday and Monday. Can you believe it? I could cry happy tears, I'm so relieved.