Time for the Big Guns

I’ve been waiting for some inspiration to write this particular edition of my blog. I needed a few days to get the proper perspective. This day is what I’ve been waiting for, this news is what I’ve wanted to hear, and now the time has come and I’m nearly stunned. In sum, I saw Dr. Porter on Tuesday, and he said that my blood tests are good enough now to go ahead with my stem cell transplant.

When he told me the big news, I felt many conflicting emotions: happiness, fear, calm, anxiety, and hope. Happiness - that finally the time has come to advance in my treatment to the “big guns” that will give me the chance to be in remission. Fear – of the pain and discomfort I will surely have to endure, and of the possible complications of treatment. Calm – that everything is in God’s hands. Anxiety – for my son and husband and family and what this will entail for them. Hope – for a return to life as I previously knew it.

It was also sort of a shock, because I have (nearly) psychologically suppressed the seriousness of my disease in the ease of the last few months of treatment with Revlimid. I haven’t been in total denial, but I think I buried the emotional pain of this diagnosis in the daily routine of work and home, without significant sickness from chemotherapy. But that’s okay. They were good months, simply enjoying life with family and friends and the last of the good weather, even if there was a bit of denial involved!

So now the testing begins. Echocardiogram, complete skeletal survey, pulmonary function tests, many tubes of blood, etc. Once that is behind me, I will being the pre-transplant preparation of Neupogen shots to stimulate stem cell growth, insertion of a central line catheter, and apheresis of the stems cells, which are then frozen. When that phase is complete, I will go into the U. of Pennsylvania hospital and receive the high-dose melphalan chemotherapy that will essentially kill my bone marrow and all those evil plasma cells that are causing havoc in my body. Some people refer to it as “rebooting the hard drive.” Then I’ll get my stem cells back (thawed out, thank you very much!) and I’ll begin the process of regrowing new stem cells.

During this period of time, which may take about 3 weeks, I’ll be staying in the hospital. Dr. Porter feels that amyloidosis patients are at risk for kidney complications from the intensive chemotherapy, so he prefers to keep me in-patient until the stem cells begin to regrow. Although I would love to be at home, it is a one-hour drive to the hospital, which is not a fun ride when you are spiking a fever. It would also be a huge challenge to separate me from my son should he get a cold or the flu, so it may be for the best that I will be in the hospital. I think it will give my husband some peace of mind, too, in the event that I develop a problem. So that is how it will happen, and I'm at peace with it. The time frame is still a bit nebulous, but I hope it will all be done by Christmas. And what a gift that would be…to be home, with my family and my new clean cells!

It was a wonderful end to my "season of discontent" to have my brother, Bill, and sister-in-law, Pat, here visiting with us. As promised, we went to Ocean City and walked the boards, thoroughly enjoying one caloric disaster after another. We enjoyed the "world's best pizza" and even braved the blasting winds to walk along the shore for awhile. My son took home some huge shells (which he named Michelle and her kids) and many fun memories of rolling in the sand. That night we went to a party given by our close friends, Greg and Rebecca. Greg entertained us with live music performed by him and his daughters, his band, and then his very talented friend. Rebecca fed us so well, as usual, until we could eat no more! The next day we somehow found a renewed appetite and had a fabulous brunch at Zinc with our wonderful friends, Tim and Lisa and their beautiful daughter, and then enjoyed a few hours on the deck followed by the requisite (at my house) Italian dinner. I just hope that Bill and Pat enjoyed themselves as much as we did. Thank you so much for coming out to see us! And when are you coming back???

So, after a few lovely months of normalcy and the support of good friends, my challenge has come, and I'm ready for it; as ready as I'll ever be, I guess.  For those of you who want to know more about autologous stem cell transplants, I can think of no better resource than the blog of my friend, Cheryl. If you want to know in detail what this process entails, go to her blog and read the entries for June and July, which is when she went through her transplant. It is a remarkable summary, including photos!, of the trials and tribulations that she faced. Thank you all for your good thoughts and prayers for my health. With you and the grace of God, I will get through this and start a brand new life in 2011.

A Good Place To Be



Angelo's Farm Market has the best mums!



In my great reluctance to give up summer, I’ve yet to haul out the Halloween decorations. Subconsciously I must feel that I can keep cold weather at bay by denying the change of seasons. However, if I don’t get moving, Halloween will come and go! Hopefully this weekend we will get some pumpkins, mums, gourds, and all those other fun things for our house. The squirrels usually gnaw away on the pumpkins, and we have to throw them out by October 31st. Also, the deer that are in our woods sometimes eat the mums, so I can't get too excited (or attached) to these decorations. I’m not much of a Halloween person but I’ll do my best for my son’s sake, because like all American kids, he loves it! 

I’m still feeling good, but tired, by the end of my long work day. I have a checkup with Dr. Porter at the end of the month, so I will find out how the Revlimid is working by then. I don’t expect any big changes in my lab work or in his plans for me. I’m just cruising along right now, without much anxiety, stress, or discomfort. It is a good place to be. And it is nice to simply pass each day without thinking too much about medical problems. I know this easy time is growing short, so I've got to enjoy it while I can.

My brother and sister-in-law are coming to visit next week, and we are really looking forward to seeing them! It is a big event for me when my siblings fly out to NJ. I hope the weather is great and we get to do some fun things while they are here, including a trip to Cape May or Ocean City, perhaps? My son will want to bring them to Mack n' Manco's, which according to him has the best pizza in the world! And we will definitely have brunch or dinner (or both!) at our favorite, Zinc Café. Whatever we do, it will be great having them here to visit.

Enjoy your weekend, and get your pumpkins before it’s too late!  

P.S. Emily, we hope you will be feeling much better very soon!  : )

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!  ; )

A Jerseylicious Day

I hope you all had as wonderful of a Labor Day as we did here in South Jersey. The weather was fantastic; that is, once that pesky hurricane blew out of town! The hurricane never really got too close, just close enough to cause rain showers in Atlantic City on Friday and gusty winds all day Saturday. But the skies were blue and the temperature was blissfully under 90 degrees, for once. This summer has surely set a record for most days over 90 degrees, and our air conditioner has run nonstop since June.

I saw Dr. Porter on Tuesday, and he said things are going as best as he could possibly hope for at this point. That is very good news, indeed. My light chains are in proper ratio and within normal limits, and that blood test was taken before I started Revlimid, so he is hoping for continued good results. (They took 10 !! tubes of blood that day, so there should be further numbers soon.) Dr. Porter said he won’t stop the Revlimid therapy until my numbers plateau, assuming there are no unmanageable side effects, so it is possible that I won’t be going through transplant for several more months.

The transplant keeps getting pushed back further and further, which has its pros and cons. Pushing back means the date is getting closer to Christmas, which would be a terrible time to be in the hospital. But I simply can’t pay any attention to the calendar; I have to pay attention to my treatment and progress. Thus far, my progress is very good, and I’m very thankful. So what is the “pro” to pushing back my transplant? Just that I’m not doing it right now. I’m not exactly in a rush, for obvious reasons!

So, eat a tomato, have yourself a Jerseylicious day, and be glad for where you are right now.  ; )

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.

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. ; )

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.  ; )