Another Day Closer

Another Friday, another treatment, and another day closer to being healed. Unfortunately my veins were not cooperating today, and now I have a lovely purple bruise on my hand in addition to another puncture that worked. The poor nurse was distraught, but I told her not to worry as it was not for a lack of skill in placing the IV, because my platelets are definitely low. My Velcade/dexamethasone regimen continues next week as well. I’m hoping for a restful weekend, and having Monday off is a wonderful bonus.

Now, if only I can get my carpeting installed in my bedroom! A few weeks back we had a leak in the pipes in our master bathroom. Water seeped through the walls under the baseboard and soaked and stained the carpeting in the closet and bedroom. We detested the mess so much that we (okay, Fritz) ripped it up before getting the carpeting installed, which is now two weeks overdue. So every time I get up in the dark in the middle of the night, I fear fainting (a side effect that hasn’t happened to me, thankfully) and cracking my head on the cement floor. Maybe we will get it installed next week, and then I can begin my quest to find the perfect beachy blue accessories to transform the room. In case you hadn't noticed, silly diversions such as this are important aspects of overcoming the blahs of chemotherapy!

FYI: I’ve added a “fixed page” on my blog’s sidebar for anyone (most likely a newly diagnosed patient) who needs information about amyloidosis. I will continue to add stuff to that page as time permits. This blog is a work in progress, and I’m enjoying the process of learning how to tweak it and make it better. It took me a long time to realize how easy it is to add photos, but now I’m on a roll. The only challenge is finding photos to add to the post. Enjoy your Memorial Day weekend. : )

Midnight Books

Yippee, 90 degrees today! I wait all year for these fabulous, sunny hot days. I'm not a Leo for nothing. I need my sun and heat. Of course that means that I must keep watering those impatiens and new plants. (Which means that Fritz does it.)

Predictably, I had trouble sleeping again last night since I had another treatment yesterday of Velcade and Dexamethasone (start of Round 3). I hope this stuff is working! I'll find out the results next Tuesday. But I get a lot of reading done when this happens. I'm currently reading Midnight in Sicily, On Art, Food, History, Travel, and La Cosa Nostra by Peter Robb. This is strictly for serious Italo-philes. It is heavy on the La Cosa Nostra part, but extremely interesting and well written. I also recently finished Still Alice, by Lisa Genova; and I Was Told There'd Be Cake, by Sloane Crosley.  The first is a powerful tearjerker, a 30-tissue, sobbing, killer of a book about early-onset Alzheimers, to be discussed this very night at bookclub. The second is a funny and irreverent look at life as a 30-something New York single woman, with whom I have absolutely nothing in common, but about whom I still enjoyed reading. I'm just SOOO glad I'm not a single 30-something woman in NYC (sorry Stacy, but gosh the "men" are the pits!). What have you all been reading lately? Tell me!

So life with AL Amyloidosis goes on. Sometimes I'm surprised by how well we are handling it. I just want it to go away, but it won't do it on its own, so I've got to keep up the fight. I think once I get to the transplant stage, reality will be hitting me over the head with a baseball bat, but for now it is very manageable. The next treatment is on Friday, and then next week on Tuesday/Friday again. Say a prayer, please, that my test results are good next week. It is a little scary waiting. I HATE WAITING. Guess I'd better get used to it.

Lemon Meringue Pie

On my lunch break I went to Home Depot and bought some paint for my bedroom. I had a vision of a beautiful pale Robin’s Egg Blue, Caribbean Aqua, or some such thing. What I came out with was a gallon of Sand Pearl. As it turned out, the aqua blues looked horrendous next to my carpet color. So instead of walls the color of Caribbean water, I will have Caribbean beach-sand walls. I’ll get the blue in there some other way! 

Decorating is difficult for me. I have come to recognize my failings in it, which typically begin with the fact that I don’t envision what I have to work with, I just envision, period. Major mistake. My vision was of pale blue walls, painted white trim, wide-plank wood floors, an antique quilt in blue and cream, and a white iron headboard that definitely isn’t mine. What I actually have is stained woodwork and camel carpeting, with pine furniture that clashes with aqua. Once I saw Robin's Egg Blue next to that carpeting, the bubble burst. Awful. Back to reality. So I chose a creamy sand color, which will work very well with my new carpeting and my woodwork and my furniture and, for the time being, my black and cream toile fabrics.

Which all gets to my point at hand (I hope you knew I would have a point). Sometimes you have to do the best you can with what you have. I’m no saint. This Day By Day stuff can get a bit tedious. More than tedious, it can be totally frustrating. It may be my life's philosophy, but it isn’t always a great big piece of lemon meringue pie. Sometimes it is only lemons. Sour. Spitting out seeds, too. But eventually, you do get a piece of pie, and things look a little better. So I’m going to make it work. My life as Lemon Meringue Pie. My sandy-beachy bedroom décor. It will all work out. It just takes compromise and a willingness to change your vision. Enjoy your weekend; it should be a beauty. Bake a pie.

Derelict Blogger

I admit to being blog delinquent. Blog-glectful. A derelict blogger. I admit it wasn’t the easiest of weeks. Dog-tiredness and jalapeno-stomach got me down. But I’m baaack!

I took a three-hour nap last Friday and then went to a lovely, thoughtful, and joyful wedding. It was so nice to see such a blissful bride and groom and their smiling parents. We enjoyed every last thing about that wedding---from the happy participants, delicious food, right down to the spectacular flowers by our incredibly talented cousin, Gina. Shameless plug: if you ever need floral arrangements for an event, please call me and get Gina’s number. She truly does beautiful work.

I’ve been reading a lot in the past week, and I must write about these books soon. But for now, I’ve got to rest. I’m home from work today with a sore throat, which I’m hoping will pass quickly. This is my off week from chemo, and I’m so relieved to have some time to recuperate. Taking it Day by Day…today is n’on che male…not too bad.

In the meantime, for those who love to collect recipes or at least enjoy reading them, check out a very good blogspot at http://mennonitegirlscancook.blogspot.com/
Browse through some of the amazing recipes categorized in the right column. These are classic American recipes with a couple of inspired twists. And if you link to any one of the co-contributors, they also have great blogspots, with their own terrific website recommendations. This could go on and on; linking, linking, linking all day long!

Happy Mother's Day

I hope that all my family and friends had a lovely Mother's Day. My husband and son and I celebrated at a very nice local restaurant with my mother- and father-in-law. I can't eat very much, for some reason, but I enjoyed everything.  My son ate so much, even I was amazed (2 pieces of bread, big bowl of pasta, 4 pieces of pizza bread, 1 piece of key lime pie, and half of another piece!). Where on earth does he put it?  But we had a nice time and I really appreciated being spoiled for the day.

If you get the chance, please visit the link at the top of the page to my favorite cause, Life2Orphans.

I had another Velcade/dexamethasone treatment today, and it went very well. Dr. Berk prescribed Nexxium for my stomach issues, so I am very hopeful that it will alleviate those awful pains. Friday is a family wedding, and I want to be able to enjoy myself a little! That's about it for today. Enjoy the sunshine.

Pazzo

One of my all time favorite books is Under The Tuscan Sun, by Frances Mayes. Ms. Mayes has written several other books that have followed her enormously successful memoir, but the first is still the best. I think it is due to the fact that in the first book, she was writing quite poetically about falling in love with Tuscany and her new town, Cortona. The other books are a continuation of that love and poetic observations of life in Italy, but to me, her incredible publishing success seems to have gotten in the way of her original goal, which was to immerse herself in the Tuscan lifestyle via the restoration of her villa in Cortona. What she professed to love most about living in Tuscany---the simplicity, the rhythym of life in tune with the seasons, the dependability of family and neighbors---is exactly what her ambitions seem to be preventing her from enjoying.

Frances Mayes is a phenomenal writer. She can write about food, furniture, or flowers in the most interesting and amazing ways. She can describe the beauty and sensuality of the Tuscan countryside like no other. She finds the joy and beauty and essence in that lifestyle and can distill it into an understandable form. With her great success, she was able to leave her job as a professor in San Francisco, where she and her husband also live, and become a full time writer. She often complained about the hectic life she had as a professor, so I am sure that was a good thing for her to do.

But what does she do with the newfound fame and fortune? Does she retire to the Tuscan countryside to embrace this lifestyle she values and promotes? NO. She gets involved in buying and restoring yet another property in Tuscany, this one even more ambitious, she acquires more land to increase their olive oil business, she continues to add more and more changes/furniture/gardens/etc to her current villa, she develops a furniture line for Drexel Heritage, she continues to write, and she does more and more and more. She acquires more stuff and more "friends" and more responsibilities. And, get this, she comments on how busy her life now is in Tuscany. I sound like I'm criticizing her choices, but I'm not; I'm simply baffled by them. Why is she doing this to herself? How could she forget why she fell in love with the Tuscan lifestyle? I am certain that there isn't one typical Tuscan who would ever live the way she does. They would think she's pazzo, crazy.

This begs the question for all of us: why do we do these things to ourselves? Why do we let our ambitions interfere with living life? Perhaps Ms. Mayes' love of restoration, and all the other things she does, is the way she wants to live.  But if it makes you crazy, as she often says it does, with all the stress and phone calls and time issues, then why do it? Why not say, how lucky am I to be able to sit back and enjoy my life in a beautiful villa in Tuscany and an equally gorgeous home in San Francisco, [oops, just found out after posting this that she now lives in South Carolina and sold her house in SF] with no money worries, no need to work, no need to juggle my time between work and pleasure. How lucky is she to have the opportunity to live a life of relaxation and enjoyment of family and real friends. And she's letting it pass her by.

When I realized how sick I was, one of the first things I thought of was how the only place I wanted to be was at home with my husband and son. I didn't think, gee, I'm going to take a trip around the world in case I don't live much longer. I realized quite clearly that when you get down to the nitty gritty, its the everyday simple things that make life wonderful.  I know this is obvious stuff. Basic stuff. But when ambitions, no matter how big or small, start to interfere with basic home life, we've got to take a step back and reevaluate.  I know I have to do this, even now.

So, as for my medical progress, no big developments. Another treatment yesterday, and another step closer to my goal of beating this alien in my blood. Living with my disease is akin to the daily changes in your body while pregnant, without the joy. Every day your body is changing. Ankles bigger or smaller; stomach hurting or not; headache and blurry vision; or, blessedly, sometimes just feeling almost normal. That is how I live now, so I try to ignore the discomforts as much as possible. Enjoy your weekend Under The Tuscan Sun, and enjoy your family and friends. They are the best part of life!

When You're Strange

Amyloidosis is such a strange disease. Dr. Porter calls it “nasty,” and I guess it is. But the really strange thing about it is that the medical community can’t even decide whether it is cancer or not. Several of you have asked me that very question, and I have had to give the strange but true answer: no one can agree. One doctor says unequivocally that it is cancer. The Mayo Clinic, no less, says it is not cancer. The medical community is decidedly undecided. Another doctor said that an argument can be made both ways, but in the end it is all semantics. Okay, I can see that. The point is that it is treated like cancer, with chemotherapy, so there you go. But I never know what to call it.

The other strange thing about this disease is that no one knows much about it. It is not on any forms, even at the hematologist’s office. So they either have to write it in, or they have to use the code for myeloma, which it is not. Amyloidosis is what is referred to as an “orphan disease." It doesn’t feel good when, as I did, you call up to make an appointment with a nephrologist, and the assistant says: “What is that disease? How do you spell that? It is not on my form. I don’t think she will see you with that disease because it is not kidney related. I don’t know what to put down. I’ll just have to talk to her to see if she will even see you, and then call you back.” As I related this conversation to my laughing sister, I said, not only will the doctor see me, oh yes!, but she will put me on her curriculum vitae. Well, maybe not. And so it goes.

So I and my orphan disease continue to be treated with Velcade. I just started the second course yesterday, with no adverse effects except a bruised hand and some inflamed veins. Dr. Berk will retest my light chains and all that other big time blood stuff at the end of the month to see if we are getting any results. I know one thing: my platelets are low, because I rubbed my eyes that were itching from pollen, and I developed huge bruises on my eyelids. I looked like I broke my nose or something! Awful. And no makeup can really cover it, either. Lesson learned: keep hands away from eyes at all times.

I feel great right now, so I am savoring today, and it is a beautiful day, too. Tomorrow may be a little harder in terms of fatigue, but today I’m feeling fine. I have lots and lots of books to read if I can’t sleep tonight, so that is good. I enjoy reading so much that I almost don’t mind the lack of sleep. Enjoy your today, too.