Making Fun in Bad Times

Just now I wrote four paragraphs and accidentally hit an unknown key and it disappeared. That's the theme of the past two months-put in a lot of effort for nothing. I took two chemo treatments that didn't work and had side effects; I put time and attention into a man who clams up under pressure; I began exercising only to find that a flare made it impossible; I prepared a pile of beautiful baby room accessories and clothing and cannot begin the market on time (you can see examples below).

I am in limbo, fighting a flare without specific meds for it. I rarely leave the house due to pain and lack of energy and frequent infection. I can't start the market with my comrades next Sunday. I have prepared and prepared and I can't carry on until something ends this.

I'm still coming to terms with the rituximab failure. Four years ago, that medicine was like a miracle. In a lot of ways it liberated me, making me healthy enough to get out of the house, be with friends and family, build a market business instead of just existing on the internet. Now, one bad treatment cycle and my doctor has stopped it. The next medication choice leads us into uncharted territory.

Today I recognized that creeping self-pity and overwhelming sadness and chose some activities to fight it. I re-read Knit 2 Together, Patterns and Stories for Serious Knitting Fun. Tracey Ullman and Mel Clark put some unusual patterns and fun narrative together, and they seem better and more useful to me now that the first time I read it. I have lots more knitting knowledge and experience and more appreciation for elegant construction and a sense of design humor.

I also pulled out a box of Seinfeld dvds, and I'm going to work my way through several seasons. It is perfect for a knitting accompaniment. There's no action for me to look up and follow. Conversation is the whole show-what happened or didn't happen or should have happened, nothing too banal or trivial to discuss. In my family, where each one's opinion is too important to keep to oneself, this sounds very familiar, and the show makes me laugh like a crazy person.

I have a crockpot of my favorite flageolet beans. Interesting food is more important when you eat alone at home day after day. It's a cheap luxury and one of the few ways I can impact my disease right now.

I've promised myself to keep writing when things are bad. This account should always be about the totality of having this damn disease, not just the triumphal moments.

Peace.

Bulldozing the Obstacles

I have always been able to see time in a very concrete way. Days stretch out before me, empty three-dimensional blocks, partially filled with activities and obligations. I can reach out my long planning arm and place an appointment into a slot and see how much of the day is obliterated. Different kinds of scheduled activities make the day lighter or darker, depending on their desirability. I can see obligations that are not firmly rooted being pushed to more distant blocks as I add in more urgent appointments. My days are balanced on a health platform that is also quite tangible - a slanting summation of physical capabilities that can make or break a day. That, too, is somewhat scheduled. I know when my treatments and medication changes will occur, and I can take full advantage of the associated energy, strength, and pain changes.

I describe this to explain why I am now in an uncomfortable position. Last week the surgeon threw me a curve ball. He wants to wait until my healing nodule shrinks as much as possible before excising it. This makes sense; small nodule means small incision means easier healing. If it becomes infected again, we will rush to remove it. In addition, a curve ball from the chemotherapy guys. No more rituximab until the whole nodule situation is resolved. So...I have a surgery appointment floating freely in my calendar matrix, and the health platform tilt has been completely changed in an unpredictable way. I don't know what happens when you only have one out of two infusions of a rituximab dose. Do enough B cells die to hold back the flares? Is there a risk of rebound flaring if the dose isn't "reinforced" by the followup?

I'm supposed to be able to travel soon, a big trip to Minnesota to visit my sister. I tend to regress with travel, so I try to be as strong as possible in anticipation of it. I also need my endurance for exercising (no weight loss without it on my pitiful metabolism), keeping up my house (no cleaning service in the budget now), finishing my current projects and stocking up for the Chattanooga Market opening in April. I've gone out on a limb scheduling things that were appropriate for my level of health over the past year, and now there may be a radical change.

So, we've dealt with the perception. What about the feelings? Well, I feel...um...okay, this is not my forte, the feelings stuff. I have to sit still and be nonintellectual and try and decipher what my gut is saying. I am anxious. Fearful. Unsettled. But I am also curious, challenged, and a little excited. The wall of adversity is climbed in our minds moreso than with our arms and legs. I have climbed it before and I know I can now.

When I was a freshman at Vanderbilt, I had a hectic schedule. I was taking engineering and science courses with lots of projects and long labs. I was introduced to independent living and using my feet for transportation. I was continuing my instruction in classical piano, making the long trek to the Peabody campus to practice for hours daily. As I walked to the music department every day, I would say to myself "I am a bull dozer, plowing relentlessly forward." I made a running narrative of my trek, detailing my progress up and down hills, across the campus lawns, up stairs and down halls. It was entertaining but it also kept me moving. That kind of narrative serves me well at times like this, where I need to keep the excitement and not get stuck on the fear.

Peace.

Getting Buff

I am on the craziest exercise program. I didn't sign up, it just caught up with me. It's free, and a good thing, as I'd never pay for such torture. It goes something like this:

Hmm. Today I'm going to sort all the stuff in my daughter's old room. I know she already sorted it, but I'm sure her heart and her short attention span got in the way. Okay, here we go, up 14 stairs. Oh my God, there are forty-seven or sixty items left here. That's okay, we've nothing but time. Closing is a week away, after all. Just sit down and calmly go through them. Oops, need a couple of boxes. Get up, fetch boxes, come back. And a trash bag. Get up, fetch trash bag, come back. Lord, what is in this tote? Lead? Lift it up, empty the lead ten pounds at a time. Oh yeah, this is the rock collection from kindergarten. I think it can go now. Repeat forty-seven times. Now let's check the closet. I'm sure she emptied...oops, two prom dresses, hiking boots (complete with dried mud), a plastic drawer set with long-forgotten junior high school clothes, a bin of books from-oh yeah, that pharm tech program. Let's just haul everything out of this closet. Bend down three more times for tiny stuffed animals. They are falling out of every crack. Where is the donation box? Over there-that's okay, we'll get some jump shots in. Donate. Donate. Donate. Wonder if they care if I put clothes in with a cow-head vaporizer? Now just lift the boxes and separate donate from deliver to house. All those trash bags of donated linens can be tossed over the rail down into the living room. Heave-smack! Heave-smack! Heave-smack! Whew, the fun part.

Next, I'll finish the guest room...

I am not joking. This particular exercise regimen is building muscle where prednisone had stolen it. Some of the challenges are unexpected. One of my helpers brought his 66 year-old mother and 8 year-old son. Son is a whirlwind, and I move more just keeping up with his antics and making sure he doesn't unpack all the "interesting" stuff that I packed. If I stay one step ahead, I can keep him busy carrying things up and down stairs. The mother is a smoker and not in great health, but she takes the stairs faster than me and insists on making three trips up and down and I... will... not... be... outdone.

I can do things now that I wouldn't attempt six months ago. It is hard training this way, but the results are evident. When this little adventure ends (you know, after I unpack the pod and get all the yarn on shelves and hang all my art) I'll be ready to head to the rec center and lift some weights.

Peace.