Blame it on Steroids and Hallmark

I was told by a very dear friend that I understate the side effects of my chemotherapy. Perhaps it is unfair of me to do that for those of you out there dealing with the same treatment or facing it in the future. So, in full disclosure, I will list everything that I’m dealing with today on Revlimid:

1. I have a headache, but it is not a bad one.
2. The edema has been hard to control for about 10 days now; my feet get fat at night and my legs look like giant bratwursts.
3. I am hoarse from the dexamethasone (steroid) I took on the weekend, but it will go away in a day or two.
4. Vision in my right eye is a little blurry from the steroids, but not too bad.
5. I always feel hungry, although I am not. Definitely blame it on the steroids.
6. My hair is barely growing at all, but at least it is still on my head.
7. I have bruises from the daily Alixtra injections (to prevent blood clots).
8. I draw the line on gastrointestinal issues. These are best left to the imagination, or you can read all about it in the literature.

All in all, Revlimid is relatively easy for me to take. I have many more side effects from the steroids than from Revlimid. For me, Revlimid definitely has been much better than Velcade, considering the esophageal pain and GI issues that I had with it.

I cannot believe that September is nearly over. One month more, and all the leaves will be on the ground, waiting for us to rake them away. My computer calendar says there are 94 days left in the year! You know what that means if you have to buy Christmas presents. Only 87 shopping days left. In the spirit of living life Day by Day, I’m going to try very hard to enjoy shopping for presents this year. But so often I find I’m getting something for the bus driver and nothing for people that I’m closest to, simply because we’re all so overwhelmed by the number of gifts we feel we have to buy. That is so stupid. Anyway, it is too soon to be thinking about Christmas, but I blame it on Hallmark.

As for books, I’m just finishing up the Peter Mayle trilogy: A Year in Provence, Tojours Provence, and Encore Provence. If you’ve never read these before, I highly recommend them for truly enjoyable armchair travel and many hilarious stories. They are a great diversion from fat feet, but they do nothing to calm my appetite, as Mayle often describes wonderful food and wines. These books are not to be missed by anyone with the slightest interest in Provence or even anthropology.

Enjoy your breezy autumn day!  ; )

Water Everywhere

Summer is winding down with the approach of school next week, so we are trying to make the best of it by fitting in a last trip to Great Wolf Lodge, which my son absolutely loves! For those of you who are unfamiliar with Great Wolf Lodge, it is a waterpark hotel that has a whimsical, rustic lodge theme. There are four restaurants inside, a spa, an arcade, and it even has a Starbucks, so I'm all set! It is a beautiful hotel and so much fun for our son. He would be in the water every day if he could. Maybe someday he will be on the swim team in high school, who knows?

Speaking of water…what is it about water, whether it is a lake or the ocean, that calms and mesmerizes? I wonder if it is the instinctive link back to our life in utero? Or is it the ancient, genetic pull to water as life giving and saving? Whatever causes that reaction, it is an authentic experience. There is nothing that I love better than sitting by the ocean and listening to the waves crashing at the shore. No wonder people have to pay more to live on the ocean or on a lake!

Speaking of lakes…we had a fabulous time yesterday at a local lake with our friends at an impromptu barbeque. The kids had a blast swimming, throwing a football, and playing games. The parents had a relaxing time talking and catching up with each other. I really enjoyed myself, and didn’t even mind the sand that came home with us too much! It really was a perfect summer evening.

I celebrated my birthday recently, and was thoroughly spoiled by my husband all weekend. Fritz took me out to several restaurants so that I wouldn’t have to cook, and I had my feet up in the hammock most of the weekend. He literally wouldn't let me do any work. I had to sneak in a load of laundry behind his back! He really outdid himself. I truly couldn’t have asked for a better birthday. I thank God I’m here and feeling well, on my way to better health.

Now, on to the medical stuff (yuck):

My first course of Revlimid/dexamethasone is now finished. Compared with Velcade, it was not bad at all. For those of you out there who may have to take Revlimid and want to know what my side effects were, here they are:

• My biggest side effect was the rash that I had on my head and arms for about 5 days.
• Edema from the steroids. Fat legs and feet. I put 10 pounds of water on really fast, and now have to take a lot of Lasix to get rid of it. Water everywhere!
• A little fatigue, but so far it is nothing significant. But I really want to sleep a lot; I can sleep 9+ hours easily.
• My hair is growing much slower than normal, which means more time between touch ups at the hair stylist. ; )
• “Chemo brain.” For those of you unfamiliar with the term, it is a condition experienced by chemo patients where you feel a bit “fuzzy brained” and have a little trouble with recall of facts or names at times.
• Platelets are down to 194 from 215, a known side effect of Revlimid.
• I continue to have peripheral neuropathy, for which I take Lyrica, but the cause is unknown and I had it before the Revlimid was started. It could very well be caused by the amyloidosis.

All in all, it was a good month. There were none of the awful GI problems that I had with Velcade, which made me very happy. However, before I get too happy, these therapies are cumulative, so next month may differ. At the end of September, I will get another blood test to check my light chains. Let’s hope they are going DOWN! ; )

Thankful

The days are passing by, and I continue to do well with Revlimid/Dexamethasone as my new treatment. Of course I haven’t had any blood work done since I started, so I don’t know yet if the treatment is actually effective. I am tolerating it much better than Velcade. My only side effect is edema, which is probably from the steroids. If you have a “Listerine” mentality that if it tastes bad, then it must work, my lack of significant side effects doesn’t bode well. However, I am hopeful, ever hopeful, that the Revlimid is chomping away on those bad plasma cells and reducing my lambda light chain in a big way. We shall see.

Although AL amyloidosis seems like having an alien at large in my bone marrow, the truth is that it is my very own plasma cells that are going to kill me if I don’t kill them first. How strange it is to think of cells growing wild in your bones, even though you feel pretty normal. Perhaps that is the problem with amyloidosis; you feel relatively well for a long time, until it has ruined your heart or your kidneys. I still wonder how long I would have gone undiagnosed had I not had my annual checkup in January? I still feel the same as I did then: a little fatigued, ankles a bit swollen, red spots around my eyelids every now and then. Who suspects a life-threatening disease when they have a little fatigue? Who expects to need a stem cell transplant for swollen ankles? It is simply too weird, too bizarre, to jump from a subtle symptom to drastic life-saving measures.

And so I take my pills each day, amazed that I don’t have to feel worse to get better. (At least I’m hoping that is true.) Modern medicine is truly awe inspiring. I once told my doctor that I was glad he had to figure out everything instead of me, because it sure is a complicated mess. Drug interactions, genetic abnormalities, past medical issues, the list of complications goes on and on. How they figure it all out is beyond me, but I’m surely thankful that they can.

The Long, Hot New Jersey Summer

I started my new treatment plan with Revlimid and dexamethasone on Friday. So far it is going well, except that I have an itchy red rash on my scalp and ears. This is not too pleasant, but I can deal with it if I must. I had such a great weekend that I thought maybe I’d get away without any side effects. But I guess if you need chemo to have a big effect, it is more likely to cause problems. Hopefully it won’t get any worse that this, and I can continue to take it for as long as needed. The heparin shots are no big deal at all. I’m already used to sticking myself daily. So if you have to do it, don’t worry one bit!

I don't want "real" life to pass me by while I'm dealing with these annoying medical issues. So I am focusing on today, which is another gorgeous summer day. Do you feel the summer changing? Although it is still really hot here in New Jersey, the hottest summer I can ever remember, I've noticed those changes signifying that we have moved into the very heart of summer. The first big change is that the blueberries are gone now, which is very sad to me as I eat them every day without ever tiring of them. I love driving past the vast blueberry fields every morning and seeing gorgeous clumps of dusky blue fruit hanging on the bushes, but now I'll have to wait until next June to see blueberries again.

Another sign of deepest summer is the cacophony of cicadas singing every night once the sun sets. They are incredibly loud, and the hotter it is, the louder they sing. I am forever amazed that a little bug can make such a big noise. But I love to hear that symphony at night; if the windows are open it actually puts me right to sleep.

Fried Tomatoes

With the end of blueberry season comes the thick of corn season, and New Jersey has the very best sweet corn I’ve ever eaten. Also, the tomatoes are gorgeously red and ripe in the fields, and farm markets display huge baskets of luscious red fruit. I fried some red tomatoes in panko crumbs this weekend---yum!--simply because we had a glut of them. I also made panzanella, which epitomizes summer. There are as many recipes for panzanella as there are hilltowns in Tuscany, so look for one that appeals to you, or just make up your own.

I can’t forget to mention the ripe Jersey peaches hanging heavily on trees, their sweet scent putting bees and wasps into a frenzy. And I can’t cook fast enough to use up all the shiny purple eggplants that Jerry brings us from his garden, which we grill with olive oil and herbs.

This is the time of year when I truly love living (day by day) in New Jersey. Besides the bounty of produce grown here in South Jersey, there are many lakes, as well as beautiful rivers and canoeing streams that wind throughout the Pine Barrens. Of course, there is always the tempting option to go “down the shore” (as the locals say) to enjoy the beach and the ocean. What more could you ask for? I am so thankful to have this summer paradise in my everyday life. Forget your problems and enjoy your summer today, for it's slipping by quickly!

P.S.: Thanks to all my readers who were so kind as to leave comments. Maybe this isn't the Biggest Loser Blog after all!  ; )

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.

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.

Earthquakes

The beautiful weather today brought to mind a lovely morning that I spent with Sally in the Piazza del Duomo in L’Aquila, Abruzzo, Italy, in May of 1998. L’Aquila is a gorgeous medieval city surrounded by the Apennine Mountains, full of astounding sights to see.  The air was crisp and cool, and Sally and I wandered throughout the morning market, enjoying our espresso and pastries, soaking up the sunshine and the surprisingly sophisticated yet small-town feel of that city. How can I express the appeal of a spring market day in Italy? Everywhere you look, you see color, color, color: tomatoes, geraniums, bright clothing, umbrellas of every hue, all against a bright blue sky and white-tipped mountains. It was so fun, so vivid, and so beautifully memorable.

Life in L'Aquila changed forever on April 6, 2009, after a destructive earthquake hit. To this day, L’Aquila still stands in shambles. It hurts me to think of it that way. I often wonder if any of the shopkeepers I met were hurt or killed in the earthquake. The masterpiece 13th century church of  Santa Maria Di Colemaggio, the very first church I saw in L’Aquila, was nearly totally destroyed. Chiesa Santa Maria del Suffragio, built in 1713, is situated in the market piazza where I watched swallows swoop in and out of the latticed dome. That same dome split down the side, a huge hole exposing the interior of the church to the elements.

Death and destruction is difficult to reconcile with such a lovely and tranquil place. I hope that someday they will reconstruct the historical center, but the citizens have given up hope that the government will do it for them. Last I read, they were forming volunteer bucket brigades to remove debris from within the medieval walls, which should make them see progress and feel more in control of their lives. Together, with their bonds of community and friendship, they will clear the debris and reclaim their city.

As we all know, life can change in an instant.  I think of my own footsteps treading that fragile fault line in L’Aquila. Most of the time, we walk the fault lines and nothing happens. Year after year, nothing out of the ordinary is likely to occur. You must think that way, rather than worry about the earthquake that might come. Why waste a gorgeous market day?

So, I’ve finished my first course with Velcade and dexamethasone. It wasn’t bad at all, not one bit, even without the anti-nausea medicine! I’m very thankful for that, and for my very excellent medical care. I’ve failed to mention my primary hematologist, Dr. Seth Berk, (Yes, Jen and Dave, Berk!) who I’m so fortunate to have take care of me. He’s a compassionate doctor at the top of his game, a grad/intern of Columbia U./Columbia-Presbyterian Hospital, who completed his residency at U. of Chicago.  Although I’m feeling tired today, tomorrow I can sleep in and rest up. Enjoy your weekend, my family and friends, and I thank you all from the bottom of my heart for all of your kind words, loving thoughts, offers of help, and prayers. You are our bucket brigade!