Thursday, December 23, 2010

Tidings of Utmost Joy!

First of all, I want to tell my friend Cheryl of my utmost joy in hearing that she is in complete remission from amyloidosis following Stem cell transplant this summer! I am absolutely thrilled for you, Cheryl, and for you your family. This Christmas gift is incomparable, and I know many people prayed, pushed and helped you to get there, but of course none more so than yourself. My happiness is complete for you. Enjoy every blessed second of your perfect Christmas gift.

My own stem cell transplant plans continue to develop. I just had 4 weeks of aggressive Decadron treatments (4 days on, 4 days off) and it managed to work some minor miracles of its own. My kidney function has improved about 50%, and my lambda/kappa ratios are very good. I am as about as good as I’ve been since this whole thing started, so I guess that is exactly where I should be a few week before going into transplant. Decadron is a powerful, difficult drug to take, so I am not without side effects. But with a few days before Christmas to go, there is nothing much left to do that would cause a problem if I decided to stay in bed all day. Family and good friends will take care of us this year, and I’m certainly not sweating the details. Things like this always put your life into proper perspective.

So Merry Christmas and Happy New Year to all of my family and friends. Keep checking this blog as I will have much more to write about in the coming weeks. Peace on Earth and healthcare for all! Love, Fay

Thursday, December 2, 2010

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.  ; )

Wednesday, November 24, 2010

Thanksgiving

Where have I been for the last month? Well, I’ve been on the phone, mainly, waiting to hear more about whether my insurance company will allow me to have my stem cell transplant at the Hospital of the University of Pennsylvania, a.k.a. “HUP.” In sum, the answer is NO. The reason? My doctor is in-network, HUP is in-network, but the procedure itself, the transplant, is not in-network, according to my insurance company. They will only allow me to go to one hospital in Philadelphia, which I will not name here, or another in Hackensack, NJ. Or I could go to a number of places requiring extensive travel. Now is that just plain stupid, or what? If I were to go to Hackensack or somewhere out of state, they’d have to pay for hotel rooms and travel expenses for me and my husband. This would end up costing way more than anything HUP would charge. Such is the reasoning of insurance companies. Actually, I think they’re trying to get rid of me.

So my choices are: 1) to go to one of these other hospitals, to a new doctor, with who-knows-how-long of a wait for doctors’ appointments, possibly more tests, and scheduling the procedure itself; 2) change my insurance company as of January 1st to one that accepts HUP as an in-network “distinction center for transplants,” which it most certainly is; or, 3) pay it all ourselves (anyone have $200,000 to spare?). Take a guess which one I’m going to do? And do you see the importance of laws that prevent insurance companies from rejecting pre-existing conditions? I would have no recourse otherwise.

I could try to force their hand and tell them how much cheaper it would be to go to HUP instead of somewhere entailing travel, but even if they agreed, the charges would still be considered “out of network” and, therefore, they would only pay up to $100,000 maximum. Everything else, which supposedly could amount to another $100,000, would be up to us to pay, which is unacceptable and unnecessary. I figure we might as well enjoy Christmas and do the transplant sometime in January. I’m waiting to hear from Dr. Porter how we will keep the enemy (i.e., amyloidosis) at bay until then. I assume I’ll have to get another round of chemo, which is fine. As long as I can do the transplant with Dr. Porter at HUP, I guess a month’s delay is not too big of a price to pay.

When I first got the news, I was very upset and nearly in tears to hear that this was happening. Then I came to my senses. First of all, I do have insurance and I will get the transplant, it is only a question of where and when. I have to keep in mind that so many people are uninsured and cannot any treatment at all. So I am thankful for my insurance. My situation is not desperate by any means, it is merely inconvenient. I think of that poor man in Arizona who was recently on the news, whose liver transplant was halted the day of the operation, because the state government cut the funds and decided not to pay for it. His partial liver, which was donated by a living relative, went to someone else. Now that is something to cry about. So I am thankful for everything that I have, including my exasperating health insurance. Even if they have excluded a wonderful, nationally renown facility like HUP.

It may be obvious, but I’ll write it down anyway: if you have good health, then you definitely have something to be very thankful for. Happy Thanksgiving to everyone!

Thursday, October 21, 2010

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.


Friday, October 8, 2010

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!  : )

Tuesday, September 28, 2010

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!  ; )

Monday, September 20, 2010

What Lies Around the Bend

I love summer. But in two days we must say goodbye to the long, hot summer of 2010. I will remember it for many reasons, not all of them particularly good. However, I want to remember the sunny days, not the drought; the warmth of the sun, not the 90+ degrees that made my car an inferno; and the wonderful summer al fresco dinners given by our friends, not the stressful summer of chemo, side effects, and doctor appointments.

As we enter autumn, I find that I’m growing more apprehensive about my upcoming challenge, namely the stem cell transplant. I was ready to rock n' roll in the spring, but now, ummmm, I’m not so keen about it, although I will definitely go through with it. However......It can be dangerous. It will definitely make me very sick. I will lose all of my hair. It will cause my family to be inconvenienced at the least, and turned upside down at the worst. And it may not work completely, too. Did I mention that before? It is true. I may go through the whole thing and find out that I have to go back on chemo again. In fact, I’m just going to expect it, so that I won’t be devastated by news of an incomplete result. But I have to take the chance, because it is the best way to kill the amyloid factory and get a complete remission of disease.

As any English student learns, seasons are often used as metaphors for different stages of life. Spring is childhood, summer is adolescence, fall is adulthood, and winter represents old age. For my medical challenges, spring was the time of discovery of the disease, summer has represented the “easy” treatment, fall will be the “serious” work, and finally, winter represents the time to rest and restore my health. (If the transplant gets postponed till winter, then I’ll have to rethink my metaphors!) Autumn may be beautiful, but for me it is becoming a time for trepidation, to wonder what lies around the bend.

However, I will look to Cheryl (see her blog at Cheryl's Amyloid Adventures ), whom I mentioned in my blog a few months ago, for a role model. At day +80 past her transplant, she biked 12 miles! She is active and feeling stronger. I can only hope to do so well, and I will try to be as positive and determined as she has been. Cheryl is a real example of the power of positive thinking. I hope that I can follow her lead.

Thursday, September 9, 2010

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.  ; )

Monday, August 30, 2010

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! ; )

Tuesday, August 24, 2010

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!

Tuesday, August 17, 2010

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.

Friday, August 13, 2010

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

Tuesday, August 10, 2010

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!  ; )

Wednesday, August 4, 2010

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. ; )

Monday, July 26, 2010

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.  ; )

Wednesday, July 21, 2010

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!  ; )

Wednesday, July 14, 2010

The Bermuda Triangle

Learning to be patient has been a life-long task for me. I really didn’t acquire the skill at all until I was in my late thirties, so it never came naturally to me. Now I find that I must dig deeper and find new reserves of patience. My treatment has come to a screeching halt due to a little problem with my right eye, which has more or less resolved itself. I don’t want to wait a minute longer to resume treatment, but I must. My doctors are being conservative and methodical in determining why I developed a problem, so until the process is complete, I have to wait it out. I will have had no less than eight appointments to get to the bottom of this mystery. Hopefully there won’t be a ninth.

So what else can possibly go wrong? Plenty! Yesterday there were large severe storms that hit PA and NJ. Apparently an electrical surge or lightning affected our house while we were at work. (What is it with me and lightning?) Our telephone and internet lines are now dead. The garage door lifter does not work. At all. And the pièce de résistance, our new, top-of-the-line air conditioner is running, running, running, but no cold air is coming out! And I believe it will be at least ninety degrees all week. Oh, by the way, the shower faucet in the hall bathroom developed a leak last week that will not stop, no matter what kind of new washers are installed. So now we need: 1) the ever-elusive Verizon technician, who was requested with no less than 50 menu options on their customer service line; 2) our garage door guy, who left for vacation today for a week; 3) the HVAC company; and 4) a plumber, who will no doubt charge us $100 just to walk through the front door.

I suppose that these are normal problems of life that all just happened to occur in a strange Bermuda Triangle kind of way. So, I will take a deep breath, relax, relax, and just let it all happen. Let it be. And my husband will write a lot of checks. ; )

Friday, July 9, 2010

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.

Monday, June 28, 2010

Abundant Happiness

This past week provided me with a few challenges. I had some  side effects from my treatment that ranged from bad to alarming. I hope that they are under control now. It is impossible, I guess, to avoid these things when taking such powerful pharmaceuticals. However, I still find myself surprised when these things happen. I think this is because deep down I believe myself impervious to physical ailments. My whole life has been blessed with good health, notwithstanding some car accident injuries. It is still difficult for me to believe that I have very serious health problems. My mind just can’t go there, for some reason. Heck, I still can’t get over the fact that I have to wear glasses to read! Apparently I have a problem with acceptance, hmmm?

I’m taking a 5-day hiatus during my week off treatment to visit with my family in Illinois. It will be great to see all of them. There are always too many things to do and not enough days to do them in, but we will make it work. It doesn’t help that everyone is at least 30 miles apart, or more. The distance between my brother’s and my parents’ house is like driving from Philadelphia to New York. I forget how big Illinois is until I drive between my siblings' homes. Endless distances. Farms. Corn fields. Corn fields. Corn fields. I'm getting sleepy, sleepy….!

Ahh, but those farms have some cool old barns, and I just love them. They have some unique round barns, too! Why they made them round, I have no idea, but they are very interesting and picturesque. Some have those great old wind vanes with horses or pigs, and arrow lightning rods with antique green glass balls for protection (theoretically). I always want to take photos of them when I spot them, and make a coffee table book out of the collection. I find myself slowing down for antiques, even though I don’t have them in my home. And I’m always tempted to get some fresh brown eggs from the farms. That reminds me of Wisconsin summer vacations from my childhood, and brings back that simple happiness that children have in abundance.

So here is wishing you a week of abundant happiness and childhood pleasures.  Enjoy  ; )

Friday, June 25, 2010

Taking It Back

This week has been one of ups and downs. I’ve struggled to keep my equilibrium. One day I feel positive, the next, negative. I might easily chalk it up to the moodiness caused by steroids, but I think I blame them too much.

I have been fighting against this disease literally taking over my life. I wake up in the morning thinking about it, and go to sleep at night thinking about it. I don’t want to do that any more. It cannot be my life. I'm taking my life back. It may seem like one doesn’t have a choice, but we all do. No matter what our situation is, we can live life with the burden chained to our ankle, or we can let it reside in a backpack--a load to carry--but not a ball and chain hindering progress.

My son wakes each day with happiness, a smile on his face. He is such a joy to me. I don’t want to cloud his sunny outlook with my concerns. My husband is a positive person, and he surely deserves to have peace and joy in his life. They inspire me to try harder, to push through these difficulties, and to find the strength to carry my backpack.

Friday, June 18, 2010

Cosmic Contemplations for My Hammock

Another week has passed, enjoyed day by day of course, and I’ve had two more Velcade/dexamethasone treatments that will continue to suppress those plasma cells trying to monopolize my blood. I’m so thankful for such a relatively benign treatment that accomplishes a truly major goal. One would think that such napalm-like devastation of these mutant cells would require something much more like Drano or Raid for Big Bad Bugs. I’m so thankful for this wonder drug that is literally saving my life.
I’ve been reading a wonderful book given to me by my friend, Teri, called Women of Courage, by Katherine Martin. It is fascinating to read about these different women and their differing ways of being courageous. It’s inspiring to hear what others have done, and their stories help me to keep my perspective on life, which is vital to my progress! If you want to be inspired, too, I really recommend it. Also, now that I've read about these women, I want to read some of their books, too.

It looks like we have a great weekend to look forward to, so I’m sharing the things I’ll be thinking about while lying in my hammock.

Mysteries of Life To Contemplate While Semi-awake in My Hammock:
  • Why are kids’ greasy popcorn hands drawn like a magnet to upholstered chairs instead of napkins?
  • Why do people put religious bumper stickers on their car and then cut you off (or worse) in traffic?
  • Why is the blue of the sky so calming?
  • Why does someone inevitably spill something on the floor the same day it gets cleaned?
  • Why do people spend lots of money to travel abroad and then complain that the food and accommodations aren’t like at home, and no one speaks English?
  • Why can’t I sing like Aretha Franklin?
  • Why do I crave hot dogs in the summer, but never in the winter?
.................. Enjoy your weekend!  ;  )

Wednesday, June 9, 2010

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!

Thursday, June 3, 2010

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.

Wednesday, June 2, 2010

It's Electrifyin'


Understatement: My trip to the hospital yesterday didn’t start out too well. When I arrived, a thunderstorm was just sliding in with ominous black clouds. An extremely loud crack sounded before I got out of my car, and I was getting very anxious about crossing the street before the storm hit. So there I was, about 200 feet from the hospital, when--CRACK--a bolt of lightning struck the top of the hospital! I jumped and screamed and ran as fast as possible since I was mere feet away from where it hit the building. I could swear I felt the electricity in the air. I wondered, is it just me? Have I become a cosmic bad-luck target? Will my picture be in the paper tomorrow?

Once I got inside the building, the fire alarm was BEEP-BEEP-BEEPing away, lights were flashing, “CODE RED, Ground Floor, Coffee shop” was being repeated over the P.A. system (I guess the old cappuccino machine caught fire!); all adding to the wild shaking of my hands and general hair-raising anxiety of the moment. I didn't know what else to do but go to my appointment. I had to go through now-closed fire doors to get to the elevators. But wait…you can’t take elevators during fire alarms!

So I had to take the stairs. FOUR flights. Do you have any idea how huge each flight of stairs is in a hospital? And with my disease I get winded very easily, so I was stopping at each flight gasping like an old geezer. I finally made it up to the fourth floor, where the doors were naturally locked, so I had to bang on them. Old people were looking at my crazed face through the little door window, probably thinking I was some kind of hospital terrorist who sets off fire alarms. Finally someone let me in, and I made it to my appointment, on time no less. With trembling hands, I got my blood pressure taken, and guess what it was? 106/64. The marvels of modern chemistry. They have me on blood pressure medicine because it protects kidneys, but it apparently works really well for my heart, too.

After such an inauspicious arrival, to say the least, I thought it might be a bad omen about my blood test results from last week. However, I got great news. Electrifying news! My blood test showed a tremendous improvement after only 2 rounds of chemo. [For those who want the medical info, my lambda light chains were once over 600; now they are 43, or “within normal limits.”]  I really didn’t know what to expect, but I was hoping for a 50% reduction in light chains. To get what is essentially a complete improvement is beyond belief. My sincerest thanks to all of you for your positive thoughts and prayers that are getting me through this madness, day by day.  : )

Friday, May 28, 2010

Another Day Closer

Another Friday, another treatment, and another day closer to being healed. Unfortunately my veins were not cooperating today, and now I have a lovely purple bruise on my hand in addition to another puncture that worked. The poor nurse was distraught, but I told her not to worry as it was not for a lack of skill in placing the IV, because my platelets are definitely low. My Velcade/dexamethasone regimen continues next week as well. I’m hoping for a restful weekend, and having Monday off is a wonderful bonus.

Now, if only I can get my carpeting installed in my bedroom! A few weeks back we had a leak in the pipes in our master bathroom. Water seeped through the walls under the baseboard and soaked and stained the carpeting in the closet and bedroom. We detested the mess so much that we (okay, Fritz) ripped it up before getting the carpeting installed, which is now two weeks overdue. So every time I get up in the dark in the middle of the night, I fear fainting (a side effect that hasn’t happened to me, thankfully) and cracking my head on the cement floor. Maybe we will get it installed next week, and then I can begin my quest to find the perfect beachy blue accessories to transform the room. In case you hadn't noticed, silly diversions such as this are important aspects of overcoming the blahs of chemotherapy!

FYI: I’ve added a “fixed page” on my blog’s sidebar for anyone (most likely a newly diagnosed patient) who needs information about amyloidosis. I will continue to add stuff to that page as time permits. This blog is a work in progress, and I’m enjoying the process of learning how to tweak it and make it better. It took me a long time to realize how easy it is to add photos, but now I’m on a roll. The only challenge is finding photos to add to the post. Enjoy your Memorial Day weekend. : )

Wednesday, May 26, 2010

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.

Friday, May 21, 2010

Lemon Meringue Pie



On my lunch break I went to Home Depot and bought some paint for my bedroom. I had a vision of a beautiful pale Robin’s Egg Blue, Caribbean Aqua, or some such thing. What I came out with was a gallon of Sand Pearl. As it turned out, the aqua blues looked horrendous next to my carpet color. So instead of walls the color of Caribbean water, I will have Caribbean beach-sand walls. I’ll get the blue in there some other way! 

Decorating is difficult for me. I have come to recognize my failings in it, which typically begin with the fact that I don’t envision what I have to work with, I just envision, period. Major mistake. My vision was of pale blue walls, painted white trim, wide-plank wood floors, an antique quilt in blue and cream, and a white iron headboard that definitely isn’t mine. What I actually have is stained woodwork and camel carpeting, with pine furniture that clashes with aqua. Once I saw Robin's Egg Blue next to that carpeting, the bubble burst. Awful. Back to reality. So I chose a creamy sand color, which will work very well with my new carpeting and my woodwork and my furniture and, for the time being, my black and cream toile fabrics.

Which all gets to my point at hand (I hope you knew I would have a point). Sometimes you have to do the best you can with what you have. I’m no saint. This Day By Day stuff can get a bit tedious. More than tedious, it can be totally frustrating. It may be my life's philosophy, but it isn’t always a great big piece of lemon meringue pie. Sometimes it is only lemons. Sour. Spitting out seeds, too. But eventually, you do get a piece of pie, and things look a little better. So I’m going to make it work. My life as Lemon Meringue Pie. My sandy-beachy bedroom décor. It will all work out. It just takes compromise and a willingness to change your vision. Enjoy your weekend; it should be a beauty. Bake a pie.

Monday, May 17, 2010

Derelict Blogger

I admit to being blog delinquent. Blog-glectful. A derelict blogger. I admit it wasn’t the easiest of weeks. Dog-tiredness and jalapeno-stomach got me down. But I’m baaack!

I took a three-hour nap last Friday and then went to a lovely, thoughtful, and joyful wedding. It was so nice to see such a blissful bride and groom and their smiling parents. We enjoyed every last thing about that wedding---from the happy participants, delicious food, right down to the spectacular flowers by our incredibly talented cousin, Gina. Shameless plug: if you ever need floral arrangements for an event, please call me and get Gina’s number. She truly does beautiful work.

I’ve been reading a lot in the past week, and I must write about these books soon. But for now, I’ve got to rest. I’m home from work today with a sore throat, which I’m hoping will pass quickly. This is my off week from chemo, and I’m so relieved to have some time to recuperate. Taking it Day by Day…today is n’on che male…not too bad.

In the meantime, for those who love to collect recipes or at least enjoy reading them, check out a very good blogspot at http://mennonitegirlscancook.blogspot.com/
Browse through some of the amazing recipes categorized in the right column. These are classic American recipes with a couple of inspired twists. And if you link to any one of the co-contributors, they also have great blogspots, with their own terrific website recommendations. This could go on and on; linking, linking, linking all day long!

Monday, May 10, 2010

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.