Silver Linings

Ahh, Decadron, I have so not missed you. Since I’m writing this at 1:37 am, does that explain in a nutshell why I feel this way? Dr. Porter put me on a rather high dose of Decadron (dexamethasone), which is a steroid, to keep the Amy Army suppressed while I wait until January, when I can have my stem cell transplant at HUP with my new insurance company! As a result, my energy level is very high (lots of cleaning going on) but I can’t sleep due to restless legs. So I started taking potassium supplements to help out with this problem. If that fails to do the trick, I guess it is back to Lyrica, although I really don’t want to go through that again. Going off Lyrica caused two weeks of killer headaches for me!

I am trying to take this unfortunate delay in good stride. The hospital is no place to be during Christmas. I’m happy to be able to have a relatively normal Christmas with my family now due to this insurance snafu. My house is partially decorated already (steroids help, zoom-zoom-zoom!), so that is nice. But we will skip the big Christmas Eve party with 7 fishes this year. I don’t think that is even possible for me to undertake. It was difficult for me even last year, I remember. At the time, I just didn’t understand why it was so hard. My energy level was not normal. I had to take many rest breaks. I figured I was just getting old! Little did I know what was brewing in my bones. How odd to think back on one year ago and think of how much has happened since then. Many changes in my perspective due to very unwelcome, life-altering news.

However, I still maintain that every black cloud has a silver lining. I have found my husband to be a tremendous, unending source of support and love, although that doesn’t surprise me in the least. I have come to realize that a lot of people, more than I ever would have expected, truly care about me and my family, and that is an awe-inspiring thing to discover. I have made strong connections with new people that have come into my life that either have, or treat, my unfortunate disease, and I treasure their input and guidance. They feel like family to me. I have come through adversity with equanimity and a positive outlook. I thank God for this strength. I could never survive this ordeal without that strength, which is as much in my blood as those dreadful plasma cells. I guess my parents knew what they were doing when they named me Faith.

So I remain positive that things will work out. I am especially happy to be spending Christmas with my family, and not in the hospital! I am thankful that I will soon get my transplant. I am so very grateful to have good health insurance. Things will get better soon, and while I’m waiting, there are books to be read, drawers to be cleaned, decorations to be placed, and cookies to be baked!

God Bless you all, and I’ll be back soon. Probably in the middle of the night again.  ; )

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!  : )

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

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.  ; )

Keeping the Jackals Out

I dreamt that I was inside a house, standing by a door. When I opened the door to a twilight sky, I looked up a hill and saw two snarling jackals profiled in the dark, with glowing eyes and horrible fangs à la Disney’s Lion King, ready to attack. I quickly moved to slam and lock the door, but found out that the door wouldn’t close or lock, because it didn’t even touch the door jamb at all. In a panic, I held the door, waiting for the animals to hit it and break through, but it never happened. Then I woke up. First of all, I was surprised that I had kept the jackals out! I felt so pleased that I had succeeded. Then I realized that the jackals symbolize all those “bad” things that can happen, and the un-lockable, un-closable door is the door to my mind, out of which I can keep the bad things with willpower alone. I think it is true that we can't lock that door, but perhaps we can keep negativity “outside” if we try. (Thanks to Marjorie Educational Books for the perfect illustration of my nightmare, illustrated by Marjorie van Heerden!)

The jackals may have been caused by my multiple eye tests yesterday at Wills Eye Institute in Philadelphia. (Did you know that Wills Eye Institute, est. 1832, was the first hospital in the U.S. dedicated to eye health, and is rated #3 in the nation for the best eye hospitals.) I had one really wacky eye test, Optical Coherence Tomography (OCT), which had squiggly red lines and a pulsing blue circle to stare at for minutes on end. My brain felt scrambled afterwards. This test takes color photos and measures the pressure of the optic nerve, and is completely non-invasive. I had another test where I stared into a lighted sphere (for lack of a better word) with tiny points of light that pop up all around to test peripheral vision. After all this, the neuro-opthalmologist came to the conclusion that my swollen optic nerve is probably due to the on/off steroids treatment schedule. She said that once steroids are withdrawn, an after effect is that the optic nerve can swell. I sure hope the swelling goes away soon, so that I can get back to the serious business of fighting amyloid. But everything has an upside: I've lost 10 pounds this month. Those steroids can put on the water weight!  ; )

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.

Friends

I made a new friend yesterday. Her name is Cheryl, and she is the first person I’ve ever talked with who also has AL amyloidosis. Cheryl found my blog somewhere (I’ll have to find out where) and contacted me. We have a lot in common besides our dreadful disease. Also, as it turns out, she is an old friend of my doctor at HUP, Dr. Porter. Now how strange is that? I really believe that some people are brought into our lives for a purpose, and Cheryl is definitely one of them. It was so amazing to talk with another woman who knows exactly how I’m feeling (both physically and mentally), what I’m going through now, and what I will have to face in the future. Our medical status is basically the same, and we are going through the same chemo regimens, so we had a lot to talk about. Cheryl is going to begin her stem cell transplant process starting next week, so please say a prayer for my new friend and for her complete and permanent remission.

I also heard from many old (as in long-term, not aged!) friends yesterday. I finally shared my medical condition with my 15 bookclub gal-pals via a group email yesterday. I hadn’t done so yet because I wanted to pretend to be “normal” for as long as possible. But I keep getting sick on Wednesdays--nothing normal about that--and missing bookclub, so I had to ’fess up. (Another confession: a few of them already knew for awhile, due to persistent questioning and my husband's inability to tell white lies.) Since then I have received a tsunami of love and support. This doesn’t surprise me from this group of wonderful women, but it still is heartwarming and very touching. From the bottom of my heart, thank you to all you Ladies of the Lakes. You will get me through this mess, I am sure of it.

In the meantime: Cheryl, you go, girl! You are in my thoughts and prayers.

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.

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.

Fog to Sun

As I drove to work this morning, enjoying music instead of commercials with my new Sirius satellite radio (thanks to my wonderful husband), I passed through some heavy fog, especially near the blueberry fields. I like fog, because it changes the landscape so much. Trees look mysterious, the terrain is shrouded with mist, and everything has a magical, mystical quality. Suddenly, as I passed a large lake, the fog dissipated and sunshine poured out of the sky onto the sparkling water. Everything came sharply into focus. It was a great moment, making my long drive truly enjoyable.

Predictably, the steroids kept me awake throughout book club last night, and beyond! At least I’m getting a lot of reading done. But I feel fine, just with my usual rosy Thursday face. Tomorrow is my last treatment till May 3rd, and this time we will try it without the anti-nausea drug, Aloxi. I’m hopeful we can eliminate that. I’m a less-is-more type of person, so I prefer to use as little medication as possible. I’ll let you know how it goes. (Keep your fingers crossed.)

I want to increase my repertoire of vegetarian dishes, so please email me with your favorite entrée. I would greatly appreciate it! I need protein, but I also have to keep my cholesterol down, so eliminating animal protein will help a lot. Also, if you have a favorite no-salt food flavoring, I would love to hear about it.

I’ve added a few new links to my page that allow those interested to read more about my doctor, David Porter, at the Hospital of the University of Pennsylvania, and the Abrahmson Cancer Center; also, Boston Medical Center, where ASCT (autologous stem cell transplant) for amyloidosis was first performed and continues to be perfected; my favorite blogs; and more amyloidosis info. While reading the scary stuff, just keep this in mind: my sister, Karen, predicts that I will be the poster child for AL Amy remission! Thanks, Karen. : )

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.