Denouement

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

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

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

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

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

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

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

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!"

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

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

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

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

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

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

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!

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. ; )