Day By Day

Denouement

2011-07-26T16:28:00.000-04:00

de·noue·ment /ˌdeɪnuˈmɑ̃/ [dey-noo-mahn] –noun

1. the final resolution of the intricacies of a plot, as of a drama or novel.
2. the place in the plot at which this occurs.
3. the outcome or resolution of a doubtful series of occurrences.

It has been 6 months since my stem cell transplant in January. I saw Dr. Porter last week and found out that my 6 month labs are all very, very good. My light chains are in normal ratio, and everything else is holding steady since the transplant. It appears that there is no disease at this point. I am so blessed!

I think back on how there were at least 6 doctors and nurses in my hospital room when I had the transplant, and how they all diligently watched me for any reactions. It amazes me that this whole medical journey even happened. There were so many complications, risks and problems that were surmounted. It seems like it was a dream, almost. (Make that a nightmare.) But the best thing is that it worked. Hopefully it will continue to do so.

I think at this point that my amyloidosis blog should come to an end. I hope that it continues to be a source of information to those who are just beginning the arduous journey of treating amyloidosis. I've really enjoyed writing this blog, and I've appreciated your comments and encouragement. (Maybe someday I'll do a blog on all those books I read!)

I am so thankful for all my family and friends who have helped me through this awful time. As I've said before, every cloud does have its silver lining, and mine was to discover the generosity and love of so many people. My gratitude is endless to you all.

Fay

PS...to Becky: please email me at daybydaybyfay@gmail.com. This system doesn’t allow me to respond to your comments, so just email me and I’ll be glad to help you with information for your mother.

Fried Grouper in Paradise

2011-07-05T14:54:00.000-04:00

Sorry about the long delay between blogs! Now that school is out, my time is spent chauffeuring my son to and from play dates with his friends. His social life is enviable.

My doctor gave me the go-ahead for a long overdue family vacation with our dear friends the Harts on the fabulous island of St. John, in the US Virgin Islands. We had the most wonderful time and our hosts, the Harts, could not have been more gracious. We stayed in their villa at the Westin resort, and it was tropically gorgeous, complete with jewel-like hummingbirds! The food was wonderful, too, everywhere we ate. We had some fried grouper, served with two sensational sauces, that was so good it could make you cry. Our son and their daughter, who have been friends since she was born, had so much fun swimming and snorkeling with each other. The snorkeling was sensational, just like an underwater Disney World in the clearest water on the planet. It was truly a vacation to remember all our lives. Our thanks to the Harts are unending for inviting us to join them on this unforgettable trip.

No news is good news, and I have no news to share with you on my medical condition, other than that I feel generally good. My only complaint (other than very short hair) is that I get very tired in the afternoon, and I still get edema, especially after a week of jerk seasoning (salty), hot weather, and two very long airplane rides! I also have a very sore left shoulder, and I’m seeing an orthopedic surgeon soon to figure out if it is related to my disease, a result of who-knows-what medication, or simply just age-related wear and tear. Hopefully it will not require any surgury. I will write again once I get another series of tests (ugh), which will probably be at the end of the month. At this point, the tests are 3 months apart. I’ll be very happy if my doctor tells me that the next set will be in 6 months! Until then, enjoy the beautiful summer weather. ; )

Sub-Urban Commando

2011-05-16T11:54:00.000-04:00

I’ve been waiting a long time to write this particular blog. I finally got the results of my bone marrow biopsy, my light chain analysis, and many and sundry tests. The bottom line is that my stem cell transplant was successful. I have less than 5% plasma cells in my bone marrow, and my lambda:kappa ratio is in normal range. These are all very good things, and it means that for now I am in the clear. I will see Dr. Porter every couple of months, but in the meantime I can start to feel normal again and regain my energy. I’m so very, very happy and thankful that my disease appears to be in check.

So now that the serious stuff is done, on to the silly stuff. Now you know I can’t let it go about the hair thing. I’m seriously considering “going commando” soon. Wait a minute, not what you’re thinking! I mean going without a head covering of any sort. Soon it will be hot outside, and although it’s perfectly comfortable to wear scarves or a wig when it’s cold, it isn’t going to be pleasant when the temperature goes over 80 degrees. Here are my current hair-less options:

First, the Lucille Ball--turban look:

Second, the Nancy Pelosi special (i.e., the WIG):

Third, and my up and coming “commando” look, a.k.a. Sigourney Weaver in Alien:

So what’s your vote? I’ve been doing the Nancy special a lot lately since I started to leave the confines of my home. I’m not a fan of the head scarf. People look at you funny when you have the scarf on, or sometimes they just have to tell you that they, too, have had chemotherapy before and have been in my shoes. I can only imagine what will happen when I go commando. But the wig gives me anonymity, except when people mistake me for Nancy and ask me for my autograph. (Just kidding.) All I really want to do is go into a store, buy my stuff, and leave. I don’t want to share stories with strangers and I don’t want pitying looks. Is that so much to ask? Did chemo make me antisocial as well as bald?

I await your votes. In the meantime, say hi to “Nancy” if you see her around. But don't ask her for an autograph; it makes her cranky. ; )

Hair Envy

2011-04-07T14:26:00.001-04:00

I’ve been having a problem with my hair lately. Or rather, the lack thereof. Those of you who have known me awhile know that I haven’t worn my hair long since my twenties. However, lately I find myself terribly envious of women that I see in television ads with long, flowing hair. After confessing this to my husband, I realized that it isn’t their hair that I’m envious of, but what it represents, which is good health. Peach fuzz, however, is the unhappy symbol of chemo and sickness. Halle Berry might look good with her head buzz cut, but Halle Berry I ain’t.

I am really struggling with this very superficial and unimportant issue, and it surprises me so much. I should be nothing but grateful that I got through a stem cell transplant with very few issues. I should be more worried about my bone marrow biopsy at the end of the month, but all I can think about is my hair. My appearance makes me sad. But of course, hair is only a symbol after all, and that is the issue. I’m not what I used to be, and I’m not a person who doesn’t give their health a second thought. In fact, I’m a peach fuzz princess who is dealing with reality every time I look in the mirror. So I may be reacting to the superficial, but the issue goes very deep. Mortality is really the issue.

But whenever I get like this, all I have to do is watch the evening news and all the misery in the world to get my perspective back. My life has been privileged compared to so many others, and I remind myself of this when I survey my very white scalp. In the meantime, I’ve got my Nancy Pelosi wig to wear when I don’t want to feel pitied, or at least scrutinized, in the supermarket, and I’m taking my B vitamins. Life goes on, thanks to God, and my hair will grow again.
Fay

Surviving the Mandolin Wind

2011-03-18T13:41:00.000-04:00

First, please consider supporting my friend, Bob Nary, who will bravely shave his head on March 25th in support of St. Baldrick's Foundation, which funds childhood cancer research grants. You can go to his webpage at:

http://www.stbaldricks.org/participants/mypage/participantid/449710

Slowly but surely, like the daffodil shoots that are pushing up through the hard dirt, our life is growing back into what it used to be. It has been a tough two months, but I am really starting to feel like myself again. I have enough strength now that Fritz was able to go back to work after taking 6 weeks off. This was a good thing for him. He is such a social person, and it must have been terribly difficult to be housebound for the past month. But he stuck it out and never complained, and was always willing to help me out with every little thing. For all those meals that he cooked, all the pills he doled out, and the endless “Can you please get me…” requests, I am forever grateful. A few days ago, I heard Rod Stewart sing the old song “Mandolin Wind” on the radio, and I immediately thought of Fritz:

       But you chose to stay, stay and keep me warm
      through the darkest nights I've ever known
       If the mandolin wind couldn't change a thing
      then I know I love ya …
       Through the coldest winter in almost fourteen years
      I couldn't believe you kept a smile
      Now I can rest assured, knowing that we've seen the worst
       And you know I love ya

When you go through something as difficult as a stem cell transplant, you are just like a baby, totally dependent on other people to get you through each day. I’m a very independent person, and this has been so hard for me to do. As my friend Cheryl advised, “I know it’s hard, but you need to let your friends and family spoil you for a while.” So I’m still trying to do that, but soon I will be strong enough to get more of my independence back.

I’m moving around, and doing things, and walking every day, in order to strengthen my body. I’m not athletic, so I have to use housework and other mundane things as part of my exercise regimen! My legs are still a bit wobbly for some reason, and I run out of energy pretty quickly, but I’m like those daffodil shoots, pushing upwards and growing stronger every day. Happy Spring!

Love to you all,
Fay ; )

Leaving the LaZBoy Behind

2011-03-07T15:04:00.000-05:00

I saw my doctor a week ago, and he said my lab results are just fine. That means my bone marrow is working and producing enough red and white cells and platelets to keep me healthy. I’m so happy that I didn’t have to go back to the hospital to get blood transfusions once I came home. It is nice to be feeling stronger and healthier, and to know that my bone marrow is functioning again.

There are other signs of progress, too. I’m able to get up out of that LaZBoy a lot more than I was just a few weeks ago, when I was more or less sitting all day. My physical strength is coming back, slowly but surely. And by eating more carefully, my stomach woes are lessening. I owe it all to Greek yogurt…it works better than any antacid that I’ve used! These are little steps but very big things in my life, which make me feel less and less like a patient, and more and more normal.

I’ve even started to read again, which shows that my brain has been cleansed from its chemo stupor. That really makes me happy! It is scary when you just can’t concentrate on anything. I’m the sort of person who has read three books at a time, so you can see why this is a great development for an avid reader like me.

My doctor wants me to continue to avoid hugging people and going to public places whenever possible. They said, “If you want to go to Target, just go at 7 in the morning when it is empty!” So that is keeping me housebound more than I’d like, but it is good advice, since I would have to go back into the hospital if I developed a fever. Now that we’ve all heard about how filthy shopping carts are, you can see why public places can be a menace for someone with a brand new immune system!

My next challenge is to start cooking again. I can’t wait to be able to stand at the stove long enough to do it. My legs are not very strong, so I have to rest after about 10 minutes of standing. But I will get there, little by little. Thanks to you all for your continuing support, both personal and spiritual. I am so grateful to have so many kind friends. Love, Fay ; )

Doing Better

2011-02-21T14:30:00.000-05:00

Hi everyone. Please forgive me the long lapse between blogs. Although I am doing well, and getting better every day, I just hate to get up out of my LaZBoy recliner to do anything! My day seems to revolve around pill schedules, twice weekly nurse visits, meals and naps. If you throw in the occasional phone call or visit, or perhaps writing a long-overdue thank you note, my day seems to be over very quickly. It is odd how little ambition (actually, none) I have right now. I mostly look forward to sleeping, which I do a lot of!

The worst of my hospital problems seem to have resolved. The GI issues are now reduced to moderate stomach discomfort from my medicines, and the edema is mostly gone. I can put socks and shoes on again! My pants are even loose on me! Yay! Although I can’t eat much, and some foods don’t appeal to me, I can eat. Case in point: I had a little bit of chili con carne yesterday, and wow, was that great! A lot better than bananas and cereal. It is so nice to be getting back to normal again.

Everyone has been so kind to us, and has done so many things for our family. I don’t think I’ll ever adequately thank them all. This has been an even bigger ordeal than I had anticipated, and I knew it would be big. I simply don’t know how we would have done it without everyone’s help and prayers. Thank you, all of you.
Love, Fay ; )

Home

2011-02-09T17:22:00.000-05:00

So, finally I am home! What a blessing and a relief to be here. I know you have all heard of the many complications that I’ve dealt with during the past two weeks, but I can tell you that the worst seems to be over and I am doing better.

That being said, all I want to do is sit in a recliner and stare at the television or sleep. I have no energy whatsoever. This procedure, and all that was involved in it, was a very hard thing to do, and I knew it would be. But at least I can say that the stem cell transplant was a success. Our prayers were answered.

Now I am waiting for the nausea, the cough, and the GI issues to go away. In the meantime I try to force myself to eat little bits of food. It isn’t easy. I can assure you that is something I have rarely said in my lifetime!

Thank you to the many people who have called, prayed, and emailed; and sent cards, gifts, flowers, and much food to keep our family well taken care of. I feel a debt that I can never repay to everyone, so I will simply try to remain in a state of gratitude for your kindness. Thank you for everything, and God bless you all. Love, Fay

"Just shoot me now!"

2011-01-31T21:05:00.000-05:00

Dear Friends of Fay (FoF),

The post title is a direct quote from Fay as of 1pm today. After several crappy days in a row, with a few detours into the truly hellish, she rated her discomfort on the crap-o-meter at 10 yesterday and 9.5 today. Dr. Sunshine predicts a reading of 8, maybe even 7, by tomorrow morning! The great news is her counts are jumping up quickly. And SHE STILL HAS ALL OF HER HAIR!!! I think she'd probably trade her hair for a little relief from the constant dry mouth, intestinal distress and random swelling.

It may be a couple of days before she feels well enough to post a real daybyday. Keep sending those loving thoughts her way.
FoF

Day +4

2011-01-25T21:22:00.000-05:00

Today is Day +4, the fourth day past my stem cell transplant, which has been a day of changes. My blood counts are down so I received two red blood cell transfusions. Thank goodness because I could barely stand up! I was also placed on 24-hour IV heparin to better control the blood clots I developed in December, since my platelets are now very low. Furthermore, my appetite has also reached new lows. For a person who loves bold and spicy flavors, it is truly strange to order plain white rice for lunch, and barely get that down. Bland is the name of the game! But no whining is allowed. ; )

My blog is just like my meals of late: small, bland, and boring. But at least tomorrow I can tell you how the snowstorm looks from my great view of the city!

Ups and Downs

2011-01-24T19:42:00.000-05:00

As expected, my counts are going down, and with them my appetite. But this is all a part of the process. I'm trying to be accepting of it, and to cope as well as possible. I am keeping in mind that my discomfort is truly much less than that of so many other people in the hospital. I read a book written by a man whose entire body was in a cast with pins into his bones....for a year! I don't dare complain in the face of others' suffering like that man's.

In the meantime, my guys are being spoiled by food deliveries from my bookclub friends. How lucky are we to have such kind friends? Thanks to you all!

Another Day Done

2011-01-22T20:17:00.000-05:00

Today was an okay day. I am starting to feel the effects of the chemo. My stomach is getting sensitive and my appetite is waning. These things are all expected, but nonetheless they are unpleasant. But I had visitors who kept me preoccupied for awhile, and that was nice. I don't have much else to report, so I'll just sign off now. Tomorrow should be an exciting day for Bears and Packers fans!

A Birthday of Sorts

2011-01-21T18:26:00.000-05:00

Today I received 3.5 million stem cells to restart my bone marrow. What an interesting process! I had 5 medical personnel all crowded into my room, all of them there to defrost the stem cells, deliver them through a complicated bag-syringe-iv line setup, monitor my heart, and many other things. Prior to the transplant, I was premedicated with benedryl, tylenol, and prednisone, all to prevent possible side effects from the preservative used on the stem cells. I was fortunate in that I didn't have any problems, and it all went very smoothly. So today is considered a sort of birthday, because following the high-dose chemo, I couldn't survive without those cells at this point. The cells will now begin the process of renewing my bone marrow and hopefully eradicating those hateful amyloid plasma cells.

I'm a bit homesick now, but I have a long way to go before I can return home. My body is just starting to feel the effects of the chemotherapy. I am beginning to feel tired, but thankfully that is the worst of it so far. I will get much sicker before I get better, but that's okay, because that is all part of the transplant process. I know that this is all going to turn out well, but I've got to finish climbing this mountain first before that can happen!

Thanks to all of you who have called and written with your support. It means very much to me. I won't always be able to reply to you all, but be assured that I am so grateful for your good wishes. I'd also like to give a special thanks to my bookclub friends, who have organized a dinner delivery for my husband and son. I think they will be very spoiled by your wonderful cooking by the time I get home! The Ladies of the Lakes are the very best!

On My Way

2011-01-20T19:04:00.000-05:00

It is so great to be writing this blog entry from my hospital room! I started my big journey yesterday, and I am so happy that it has finally begun.

I received my "conditioning" yesterday, which consisted of one big bag of melphalan. I feel pretty good today, only a sore throat, which I hope is not a sign that I'm getting a cold that I cannot afford to get right now. Tomorrow morning I will get my stem cells back, and will begin the process of rebulding my bone marrow. All I can say is that it is so good to be getting this over with.

I will try to make a quick entry daily, or as often as I feel well enough to do it. Many many thanks to all you who have emailed, texted, and called. All of your thoughts and prayers are so appreciated.
Love, Fay

You Can't Hide

2011-01-17T14:11:00.002-05:00

Before I write about last week, I must give a huge hug and a thousand bacis to my old coworkers at Prudential Fox and Roach Realtors, who surprised me with a gorgeous gift basket filled with wonderful things. I always said that the best part about being a realtor was the office and my friends there. Keep in mind that I haven’t worked there in over a year, yet once they heard about my illness, they pitched in like always and contributed to buy many generous gifts, including a Kindle, which will certainly come in handy while I’m in the hospital. Your love and concern is humbling.

I’d especially like to thank:

Di G., for her très amusant, tour de force, Troupe de Prudentiale cancan presentation (sorry, you just had to see it to believe it), which caused my friends and me to howl with laughter!
The expert mystery baker who gave a huge canister of delicious home baked cookies.
Barbara C. for the gorgeous purple orchids, which I have always loved.
Meredith H., for the very thoughtful, special pillow and 21 days of little presents, which will be so fun to open!

And to the following three ladies who shopped, organized, and surprised me with lunch Chez moi:

Fran B., and her husband Bill, for the delicious German chocolate cake he baked just for me. : )
Colleen T., for the incredibly zingy flatbread pizzas, that will live on in my tastebud memories during my upcoming bland food days, and that gorgeous smart jacket that I’ll really enjoy wearing.
Marianne P., for her wonderful Chicken Tortilla Soup, which I’d been craving for weeks, and a great salad, as well as for our many happy years of working together.

Thank you, from the bottom of my very grateful heart to all of you.
---------

Last week was a great success. I had my pheresis catheter inserted on Monday. Thankfully our dear friend Sally patiently helped me and spent the entire day there with me, and some of the evening, too! Then I went to the Apheresis Clinic on Tuesday and was hooked up to the incredible stem cell collection machine. I was not feeling well (understatement) due to the Mozobil injection from the previous evening, which mobilizes stem cells from the marrow into the bloodstream. So I slept a bit, whined a lot, and was aided all morning long by another dear and patient friend, Lisa. After 3 hours, they collected 13,000,000 stem cells, which is more than twice as much as needed for my stem cell transplant! Off they went to the freezer for safe keeping.

I was so happy to find out that I did not have to return the next two days, as previously expected, to complete the collection process. Such great news! So although the Mozobil made me nauseous for two days (the numero uno side effect), it was worth it. The next step is admission to the hospital, which is scheduled for Wednesday. I don’t get too attached to dates like this because they are affected by so many variables, especially, is there a room available for me? So I’m waiting patiently, trying to get my things ready to move into “my room” for about three weeks.

Songs that get "stuck" in my head often reveal a truth of some sort. So, the other night, when I couldn’t get a favorite old song out of my head, I decided to pay attention to the lyrics. It only took a few seconds to figure it out:

      I can tell you all I know, the where to go, the what to do
      You can try to run, but you can't hide from what's inside of you
                      Any Major Dude Will Tell You, by Steely Dan

I can’t hide from what’s inside of me, although sometimes I wish I could. The time has finally come to face it head on and do battle. I’m so ready.   ; )

Don't Even Try to Stop Me!

2011-01-03T23:42:00.000-05:00

Me and My Guys on Christmas Eve

Happy 2011. I’m hoping this is my lucky year!

I had a little setback recently. A few days before Christmas, I fell outside of the post office. My leg just gave out, and down I went on to my knees and hands. My doctor told me that Decadron weakens the large muscles in your body, so that was the reason why my legs were getting weaker and weaker with each dose. When I fell, it didn’t seem like a big deal. My knees were sore and a little cut up, but nothing drastic. But my legs were very swollen from from the steroids, so it was difficult to discern the damage.

But by Christmas Day, I was limping badly on my right leg. The next day, I could barely walk five feet without crying. Literally. And I don’t ever cry from pain, not even when I get a bone marrow biopsy. So that was my “big hint” that something wasn’t right. The next morning I went straight to my primary doctor, asked for an ultrasound and x-ray to see if I had a blood clot in my leg. I had one before, a long time ago, from a car accident. So I kind of figured out what it was. And I was right, so I was admitted to the hospital by that evening.

Fortunately, my local hematologist was at the hospital the next day, and he immediately became involved. My biggest fear was that the blood clot would delay my stem cell transplant. He spoke with Dr. Porter at HUP, and they came up with a treatment for the blood clot that would not interfere with the transplant at all. I was so happy! And with that treatment plan in place, I was discharged from the hospital within 24 hours. I was so relieved to get out of there. I felt like I was in a germ cloud. It is just the nature of hospitals, but the last thing I need is another complication.

I’m feeling much better now. I can walk very well and can drive again. So now that this "little problem" is being taking care of, we are going forward with planning my transplant schedule. As of today, it looks like I may be admitted to HUP by the middle of January. Once the date is definite, I will put it on my blog.

Thanks for checking in on me. We are doing well, hanging in there, and thinking positive thoughts! Happy New Year, everyone. ; )

Tidings of Utmost Joy!

2010-12-23T10:05:00.000-05:00

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

Silver Linings

2010-12-02T02:45:00.000-05:00

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. ; )

Thanksgiving

2010-11-24T16:58:00.000-05:00

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!

Time for the Big Guns

2010-10-21T11:34:00.000-04:00

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 ~~dis~~content" 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

2010-10-08T08:52:00.000-04:00

Angelo's Farm Market has the best mums!

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

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

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

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

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

Blame it on Steroids and Hallmark

2010-09-28T16:31:00.000-04:00

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! ; )

What Lies Around the Bend

2010-09-20T14:29:00.000-04:00

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.

A Jerseylicious Day

2010-09-09T16:17:00.001-04:00

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

2010-08-30T10:28:00.000-04:00

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! ; )