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! ; )

Take a Ride Through Jersey, Baby

It is my opinion that we should not be serious all the time. So today's blog has nothing to do with my disease. It is a fun photoblog for my readers from other states or countries (as far away as Australia, China, Japan, Slovenia, and more!) who have no idea what New Jersey looks like. This photoblog shows sights on my drive to work each day. Don't be fooled by what you hear; despite overdevelopment in many areas, South Jersey is beautiful in certain areas. There isn't a Grand Canyon-esque type beauty, but rather a subtle one. Also, this is the East Coast---YO---so a Jersey attitude is in order, which shows up in our signage. I've included photos of some retro and odd signs that intrigue me. Most of these unprofessional photos were literally taken while driving to/from work. You will see rearview mirrors, windshield wipers, and windows! But this is all about having fun. Hope you enjoy the ride.

Through the woods, on my way to work, I see a...

Misty morning farm

Mighty Joe - believe it or not, a touching tribute to a deceased son

Field of flowers

Old town buildings

Graceful park fountain

Lush vineyards

Ubiquitous chrome diner

5,000 acres of blueberry fields in humid haze

Lake park entrance

Picturesque farm market

Lovely lake and marina.

My son took this from the back seat  ; )

Pic-A-Lilli Bar; the best Buffalo hot wings around, but a very strange, old, and ugly sign. I think it's been used for target practice.

Love Glossy Fruit and their retro sign

Sorry about the car, but why has this ugly, rusted, broken old gas sign existed for so long without any purpose?

I love it...."Only One in Jersey, Baby"
Ice Cream with a Jersey Attitude

Oh, my. What can I say?

The long and winding road, that leads to my job.
Thanks for coming along. Hope you enjoyed the ride!

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.

Tomorrow

Treatment with Revlimid is going well so far. The only side effects are tiredness at night and that rash I mentioned earlier, which seems to be fading. I'm thankful that it is going so well. I sure hope it is doing something! My doctor says I'll probably have two months of treatment with Revlimid, and then we will consider stem cell transplant at that time. I think it all depends on how many (bad) plasma cells are remaining.

I look forward to a day where I no longer have to think about my disease. It is possible, I suppose, that I will wake up one morning and not think about which pills I need to take, whether my stomach is upset, or how swollen my feet are today. Most importantly, I won’t be worrying about how I’ll be (or if I’ll be alive) next year at this time. Part of me wonders if that day will ever come, and the other says, “Don’t you dare doubt it for one minute!” Accepting that even next week is unknown is surely a huge part of my daily struggle with amyloidosis. Treatment is not always successful; a future is unclear.

I just read the blog of a man, a barbeque specialist, who wrote about his third place win in a prestigious barbeque contest and was promising to post photos on his blog tomorrow. On the next day, the blog was written by this man’s son, who said his father died unexpectedly the previous night. It was very touching and strange to read his son’s grieving words and this deceased man’s last thoughts, knowing what he did not, that it was his last day to live on this earth, and that he would never post those photos. “Tomorrow is promised to no one.” I know this to be true, so why do I always feel like tomorrow is definitely going to happen?

It must be that we can’t perceive a world without ourselves in it. I think Freud would point out that one’s Ego cannot allow a person to believe they will die. It certainly isn’t healthy to dwell on it, and I don’t mean to suggest that we should think about this dire fact on a daily basis. That would suck the joy out of life! No, we can’t dwell on it. We just need to appreciate each day as the gift that it is, and have faith in our future.

“…faith is the assurance of things hoped for, the conviction of things not seen…”
Hebrews 11:1-2

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!  ; )

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. ; )