"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. ; )