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 ; )

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.   ; )

Silver Linings

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

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

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

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

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

Time for the Big Guns

I’ve been waiting for some inspiration to write this particular edition of my blog. I needed a few days to get the proper perspective. This day is what I’ve been waiting for, this news is what I’ve wanted to hear, and now the time has come and I’m nearly stunned. In sum, I saw Dr. Porter on Tuesday, and he said that my blood tests are good enough now to go ahead with my stem cell transplant.

When he told me the big news, I felt many conflicting emotions: happiness, fear, calm, anxiety, and hope. Happiness - that finally the time has come to advance in my treatment to the “big guns” that will give me the chance to be in remission. Fear – of the pain and discomfort I will surely have to endure, and of the possible complications of treatment. Calm – that everything is in God’s hands. Anxiety – for my son and husband and family and what this will entail for them. Hope – for a return to life as I previously knew it.

It was also sort of a shock, because I have (nearly) psychologically suppressed the seriousness of my disease in the ease of the last few months of treatment with Revlimid. I haven’t been in total denial, but I think I buried the emotional pain of this diagnosis in the daily routine of work and home, without significant sickness from chemotherapy. But that’s okay. They were good months, simply enjoying life with family and friends and the last of the good weather, even if there was a bit of denial involved!

So now the testing begins. Echocardiogram, complete skeletal survey, pulmonary function tests, many tubes of blood, etc. Once that is behind me, I will being the pre-transplant preparation of Neupogen shots to stimulate stem cell growth, insertion of a central line catheter, and apheresis of the stems cells, which are then frozen. When that phase is complete, I will go into the U. of Pennsylvania hospital and receive the high-dose melphalan chemotherapy that will essentially kill my bone marrow and all those evil plasma cells that are causing havoc in my body. Some people refer to it as “rebooting the hard drive.” Then I’ll get my stem cells back (thawed out, thank you very much!) and I’ll begin the process of regrowing new stem cells.

During this period of time, which may take about 3 weeks, I’ll be staying in the hospital. Dr. Porter feels that amyloidosis patients are at risk for kidney complications from the intensive chemotherapy, so he prefers to keep me in-patient until the stem cells begin to regrow. Although I would love to be at home, it is a one-hour drive to the hospital, which is not a fun ride when you are spiking a fever. It would also be a huge challenge to separate me from my son should he get a cold or the flu, so it may be for the best that I will be in the hospital. I think it will give my husband some peace of mind, too, in the event that I develop a problem. So that is how it will happen, and I'm at peace with it. The time frame is still a bit nebulous, but I hope it will all be done by Christmas. And what a gift that would be…to be home, with my family and my new clean cells!

It was a wonderful end to my "season of discontent" to have my brother, Bill, and sister-in-law, Pat, here visiting with us. As promised, we went to Ocean City and walked the boards, thoroughly enjoying one caloric disaster after another. We enjoyed the "world's best pizza" and even braved the blasting winds to walk along the shore for awhile. My son took home some huge shells (which he named Michelle and her kids) and many fun memories of rolling in the sand. That night we went to a party given by our close friends, Greg and Rebecca. Greg entertained us with live music performed by him and his daughters, his band, and then his very talented friend. Rebecca fed us so well, as usual, until we could eat no more! The next day we somehow found a renewed appetite and had a fabulous brunch at Zinc with our wonderful friends, Tim and Lisa and their beautiful daughter, and then enjoyed a few hours on the deck followed by the requisite (at my house) Italian dinner. I just hope that Bill and Pat enjoyed themselves as much as we did. Thank you so much for coming out to see us! And when are you coming back???

So, after a few lovely months of normalcy and the support of good friends, my challenge has come, and I'm ready for it; as ready as I'll ever be, I guess.  For those of you who want to know more about autologous stem cell transplants, I can think of no better resource than the blog of my friend, Cheryl. If you want to know in detail what this process entails, go to her blog and read the entries for June and July, which is when she went through her transplant. It is a remarkable summary, including photos!, of the trials and tribulations that she faced. Thank you all for your good thoughts and prayers for my health. With you and the grace of God, I will get through this and start a brand new life in 2011.

A 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.  ; )

Fog to Sun

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

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

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

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