I wouldn’t do it if the payoff weren’t so big. Having someone hold a cigar shaped incense-like stick, the tip glowing orange with heat, mere inches from my belly is not high on my Fun Times list.
But it’s so worth it.
Moxa might sound a little bit like torture, but it’s actually a super fab form of Chinese medicine that is nothing short of a miracle. The moxa stick is lit and heated until it glows, then it’s applied to acupuncture points. The practitioner (in this case Barrett as he has a better view and steadier hands than I do), amidst billowing smoke and ashes that get tapped off into a fire safe container, holds the stick a few inches above the acupuncture point and makes tiny little circles.
It discourages dampness and invigorates my vital qi. In other words, I feel GREAT after and the liquid retention in my belly seems to shrink up a bit each time we do it–which is pretty much every day.
I only get that sensation of being singed every once in a while when the moxa stick gets just a little too close.
I swear we have done all we can to make the end of March go smoothly. On Friday, I even had the suckage procedure done to deal with the ascites (abdominal fluid that sits on top of your organs) so that I could have a super awesome weekend. No more turtle-on-its-back struggling to get up, no more huffing around like a great huffing thing, and NO MORE LACK OF APPETITE! My dream was to make room for tasty vittles and get some good air-flow coming in for fun adventures.
So the hospital suckage team sucked with their vacuum sealed bottles and got out a full two liters like last time I had this done (two liters! That’s like carrying around a giant coke bottle on top of your belly! among other useful organs) and I have to tell you (skip if easily grossed out) it comes out looking just like beer. Not as dark as stout, more of a dark amber.
We geared up for a weekend of awesomeness.
–a cold came on
–and a fever.
This completely wiped me out. Even with the addition of the usual pain/nausea dance I’ve been dealing with lately, this fatigue seemed out of proportion.
Which, as it turns out, it was. Test results came back yesterday with the news that:
–the abdominal infection I had is lingering (boo!)
–my potassium levels are low (hiss!)
–and, the kicker, my hemoglobin levels are uber low (triple boo hiss!)
But I figured I’m tough, so we started Round 2 of this new chemo regime yesterday anyway. Along with the addition of some bags of potassium and other minerals that could be boosted. It was a looooong day.
Now I just need to get some fresh blood in me ASAP. Yesterday, I couldn’t get in. Today, they only had a slot for one bag of blood. But tomorrow I finally got a spot. I’m scheduled for a full day of fun and relaxation at the blood transfusion center which I’ve been told is quite nice and that they even have TV. I get to sit back and lounge, while they bring on the blood. I’m thinking about bringing my iPod, a little Agatha Christie and maybe even some fun catalogs to pass the time.
A vampire should be so lucky.
Until then, I’m supposed to lay low and keep the hi-jinx to a minimum. If I get out breath (god forbid) or feel any chest pain, I have to go directly to the ER which I imagine is not such a fun place to get blood. That is where the crazy people hang out. It’s worse than the public library. (Librarian pals, you know what I’m talking about!)
At least we got to watch the entirety of Downton Abbey on Netflix over the weekened (thanks for the tip Gabe and Johanna!) and I was able to take advantage of my post suckage/pre-chemo appetite and get in lots of great Indian food.
April 1, I’m ready for you! I hope everyone else is managing to have a fab March. Or even a boring one.
Since we moved into this house back in October, I’ve been trying to come around to the purple bedroom. I LIKE purple, plus it’s good feng shui and everything.
But it made our room so very, very dark.
Like living in a cave.
A purple Barney cave.
Last week, we couldn’t take it anymore.
We got out our little Devine paint sample sheets and started narrowing down our color choices. We didn’t want any of the colors that are downstairs—green, brown, and theoretical red (we haven’t painted that room yet), because we wanted it to feel like a retreat. No one wants to be subconsciously pushed into thinking about taxes in bed because their bedroom is the same color as their office.
Light was definitely important—no more cave! We wanted something cheerful and sunny, a color that makes you smile when you see it.
We sampled three different colors:
Devine Le Pot D’Or, a goldie gold
Devine Blue, which sounds boring but looks like a bright blue sky on a sunny day
Devine Cream, a creamy yellow
Devine Cream won.
I am completely in love with this color—it’s like that organic Irish butter you buy in the foil packet. Buttery, sunny, warm. It’s not too bright or too pastel.
Tomorrow is our second wedding anniversary—huzzah! We’d planned to celebrate, but our plans have been smashed to bits. One naughty abdominal tumor is rebelling out of control and we must take action fast which means going back to one of those hardcore chemos that worked so well before. It’s been long enough since I was last on it that I should be able to handle the toxicity and since we had so much success before it got too toxic (loss of feeling in my fingers and toes), we think it’ll get in there and kick some tumor behind. We’re mixing it up with a couple of new drugs too so it might work even BETTER than it did last time.
And, of course, the treatment is starting tomorrow. On our wedding anniversary. Any sooner and the insurance wouldn’t have gone through yet, any later and this nasty little tumor would have that much more time to cause trouble.
This is what we get for getting married in the hospital! Hospital/Anniversary Karma. (If you’ve forgotten the wedding saga, Lee Wind posted a super sweet blog about the whole thing way back when and he quotes me telling the story, but I can’t find my quote amongst my own stuff.)
This chemo treatment is only for the short term. My new doctor is awesome and has a PLAN! A long-range plan, no less. With a future that involves some more innovative and less harsh treatments.
I’m ordering lots of light books from the library and getting prepared for the big hit. Maybe it won’t be so bad this time?
At the very least, I have a super awesome sunshiney bedroom to come home to!
When you’re being held hostage at a medical facility such as the ER or the Imaging waiting room, you have a few options. You can spend your time screaming and throwing things at the nurses (a course many patients choose to take) or you can entertain yourself with some hilarious online Time Wasters.
I have clouds on my feet. My new slippers surround each foot with thick, luxurious, magical cush. I put them on and, no matter how tired I’m feeling, I want to squish, squish, squish around the house in them. They don’t have backs on them so I can easily slip them on in the middle of the night and not miss out on any cloudy goodness on the way to the bathroom or sneaking downstairs for milk and cookies.
The only trouble with the backlessness is trying to keep them on when I cuddle up on the couch, but it’s a sacrifice that I think must be made for middle of the night slip-on ease.
They even have some serious tread on the bottom that looks up to all sorts of adventures.
Thanks, Aunt Jane!
Cush. Scrumptious and squashy. We all need some cush in our lives, but it is never more important than when you’re not feeling well which brings me to another tip in Bridget’s Guide to Surviving Life & All It’s Bizarreness When You Are Temporarily Health Challenged. I think we’re up to Tip #4.
Try to make your physical world as soft as possible. The physical world can seem like a particularly harsh place. Different effects from different drugs or disorders can make you painfully sensitive to harsh fabrics and hard surfaces. Trying to make the world around you comfortable can go a long way to overall well-being.
Clean, super soft sheets, silky pajamas, a nice pillowtop bed, clothes that don’t pinch or bind, chairs that support your back and offer padding, and, of course, cushy slippers can make a huge difference.
So if you’re a friend and looking for something to buy (I get e-mails asking for present suggestions for sick friends all of the time!) or are a temporarily ill person yourself, think soft.
I’ve been at an ouchy low for the past few weeks, so I’ve especially been appreciating the cush so many of you have brought into my life with soft jammies etc. I got about 24 hours or so of relief last weekend (via a suckage procedure that I will spare you the details of) and it was so fab–there was singing. But the beast is back and I’m all wimpery and incapacitated again.
There is a ray of light though! We’ve figured out the source of what ails me–a slow-moving insidious abdominal infection that can be treated with antibiotics. We’ve suspended cancer treatment for the nonce to focus on this and HOPEFULLY there will be singing again soon.