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.

Summer Slows

So, what’s up with you? Let me know, because there’s nothing much new with me, that’s for sure. I saw my doctor on Monday and signed and initialed many sheets of paper for my new treatment, Revlimid, but I can’t get it until the factory ships it to me. I guess this chemo is so restricted that it isn’t carried in a normal pharmacy. And since it is just a pill, I don’t get it at my doctor’s office like I did my other treatment, Velcade, which was given intravenously. It doesn’t inspire much confidence when you have to sign practically in blood that you understand all the risks. Okay, okay, I get it. Now, can I have it? Until I get something, guess what isn’t happening? I’m not getting better, that’s what.

Photo Website

The other new development is that I will have to give myself daily heparin injections, because this drug can cause blood clots, and I have a genetic clotting factor that makes me more susceptible than other people. I can’t complain too much about this, because there are millions of people in the world who get daily injections for diabetes and other diseases. So I’ll deal with it, but I don’t have to like it!

I’ve noticed that blogs everywhere seem to be suffering from the summer slows, mine included, so I’ve been looking around for new ones while my favorites recharge. I found a neat blog today that also has many links to foodie sites, so if you’re interested, check out Gatti Fili e Farina and click away.

By the way, I encourage you all to leave a comment every now and then or become a “follower” so that this doesn’t look like the Biggest Loser Blog ever! And in the meantime, I’ll be back once I have something new to tell you. ; )

Mixed Metaphors

The plan has been changed mid-game. My docs are going to put me on Revlimid instead of Velcade. The upside: Revlimid is in a pill form, instead of IV like Velcade. The downside: the side effects are multiple and serious. We’re talking deep vein thrombosis and pulmonary embolisms, with a side of cytopenias (very low blood counts). I pray I’m one of the lucky ones who gets by without any problems. It’s funny but true; the devil you know is better than the devil you don’t know. So right now I’m looking back fondly at Velcade. I’ll take a stomach ache over deep vein thrombosis any day! Guess I should take a stroll down memory lane and read a few blogs back, when I wanted to stop it immediately. Beware of what you wish for….

This whole thing is just a crap shoot, really, so I’m just throwing the dice again to see what I get. Why, you ask? Because none of these drugs are meant for AL amyloidosis. They were developed for multiple myeloma. The two diseases have some of the same characteristics, so the drugs do work for amyloidosis. But when you are in this leaky old boat called AL amyloidosis, you just wish someone would say, “Take this, it’ll stop the leaks immediately!” NOT going to happen. I just have faith that eventually everything we throw at this disease will stop it. I really do believe that we will succeed, but the path is crooked and full of switch-backs and steep inclines. Persevere, everyone. (Forgive me, this whole paragraph is a ridiculous mess of mixed metaphors.)

I was recently contacted by a lovely lady from Texas named Vasca whose husband was just diagnosed with AL amyloidosis. They are preparing for the fight with determination and faith. Please say a prayer for Michael that he will have an excellent response to treatment. Click here to follow his progress at their blogspot.

I can’t believe that July is almost gone already. The summer goes so fast, so why doesn’t February??? Hang in there, everyone.  ; )

Flying and Other Alien Experiences

I’m baaaack. Despite the corn fields, corn fields, corn fields, I made it without falling asleep and running into a barn. That’s because I took a charter bus from the airport to my parents house! However, I almost didn’t fly out due to losing too much fluid the day before from my diuretic. I guess I was dehydrated from losing 4 pounds in one day, and got very sick. But I rallied the next morning. It was wonderful to see my parents, sisters, brother, and extended family, and they held a nice party that everyone attended. And for once, the weather was perfect. (This is really saying something for Chicago.) I only wish I could do it more often. This year won’t be the year, however, of more than one trip back home.

On Wednesday I had a MRI study of my eyes and brain to investigate the mystery of my swollen optic nerve. My doctors are almost positive that it is not due to amyloidosis. They don’t know if it is a side effect of Velcade and/or steroids, or if it is unrelated. I opted for an open MRI, because I cannot tolerate being in a closed MRI without losing my mind.

I tried having a closed MRI a few years ago. I told the technician, who insisted on keeping me in that torture chamber much longer than I wanted (probably all of 2 minutes), that it didn’t matter what the MRI would find, because I would die if I stayed a minute more in that tube! Thus the open MRI was the only way for me. It actually wasn’t terrible. I laid my head in a foam head positioner. Not bad at all. But then they put this mask over my face that looked like I should be a goalie! Not good. But I could breathe, and that is always a good thing. ; ) She slid the table back under the MRI scanner, which looks like a hovering spacecraft, no kidding. I felt like my head was in a microwave. If you’ve never experienced it before, it is so noisy! Knocking, banging, weird, wooo-wooo-wooo alien sounds. But I persevered and completed the whole procedure. More tests and stuff next week. For now, they say the optic nerve is no longer swollen, so that is good news. Have a great weekend.

Three Down, Three To Go

Yesterday my doctor made me very unhappy. He told me that I still have to go through three more courses of Velcade before I have a stem cell transplant in late September. Although that has been the plan all along, I really thought (there I go, thinking again; bad idea) that since my light chains are now in a proper ratio that Dr. Porter would say, “Good news, you’re ready now!” Not so fast, Ms. Day By Day.

So why do I feel like my term at Bellyache Jail was just extended by three months? I had no reason to expect otherwise. I trust my doctor, completely. However, my Inner Child is screaming, “I want those plasma cells dead, and I want them dead now!” My irrational fears are ruining my calm. Of course Mature Me says, “I will do whatever my doctor says is best and I will cooperate fully with the treatment plan.” But…

I don’t wanna !!!!!   

Okay, I always try to find the silver lining in every cloud. I’m trying hard. So far all I’ve got is this: there won’t be reruns on television in late September when I’m confined to my hospital room. The new programs should be starting by then. Years ago I was in the hospital during the summer (this was way pre-internet, cell phones, etc.), and my only entertainment, a television, was an instrument of torture.  Although I think current television programming is abysmal under the best of circumstances, summer programming truly sets the bar. All I can say is that I hope HUP has the Food Network and HGTV!

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.

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.

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!

All That Glitters...

I had another treatment yesterday, and it went very well. Since Velcade is not your normal napalm, burn-and-blast-everything-in-its-path-type chemo drug, I like to think of it as my own personal PacMan in my bloodstream, cheerily chomping up plasma cells. I do believe there is some benefit to be had from directed imagery, where you think of the medicine going in your body and having beneficial effects. So I picture "glittering" Velcade sliding through my dark veins, chomping on those lurking plasma cells. I guess it is working as my counts are starting to go down. Something is happening, that is for sure.  Now, if only I can find a seat in church where no one will cough on me! But I feel so well, that I practically feel guilty. Other people get so exhausted, so I'm very appreciative that I get such an easy treatment (for now).  This drug is so sophisticated that it is hard to explain how it works. Perhaps I can prevail on my good friend, Tim, a scientist, to give me an explanation in layman's terms for apoptosis? Then I'll post it for you all.  It is way more amazing than flying to the moon!

I just finished reading an inspiring story written by a 16-year and counting AL Amyloidosis survivor (http://sites.google.com/site/curedofamy/Home).  He was in congestive heart failure, very bad shape, and had a peripheral blood stem cell transplant in 1994! He was the 2nd patient known to have this done for amyloidosis. An amazing and inspiring story. This guy has more guts and gumption than any ten people you know.  I hope some of that has rubbed off on me. He has strengthened my certainty that I will do really well with this treatment. Do you know that many people don't get the proper diagnosis of AL Amy for over 2 years? It took my great docs only 3 months. That is going to make all the difference.

I have my book club tonight, and I hope that I can stay awake for it, since the Decadron woke me at 3:30 am. A small price to pay. More treatment on Friday, and then I get one week off for my counts to come back up. I actually look forward to the treatments, as I know I am making progress. And it doesn't hurt that my doctor's office spoils their patients with coffee, juices, breakfast treats and even hoagies for those with strong stomachs! If I stay on these steriods much longer around all that food, I'm going to have to buy some PLUS sizes.  ; )   Later.