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    Okay, so you’re starting chemo. It was more than five years ago for me, but I still remember. Here’s what I wish someone had told me:

    This one is the hardest, because it’s unknown. Once this one is over, you will feel so much better, because you will know what to expect for the next ones. Each one will be a little harder than the last, because the effects are cumulative. The good news is that typically they don’t change. You’ll get a sense of how it goes after this one. I was vastly relieved that I didn’t turn green or blow up. That’s the irrational fear, isn’t it? The good news is that these folks really know what they’re doing. They’ve been doing it for a long time and they have it down to a science. You are in very good hands.

    It’s great to have a buddy who’s been there. It’s not really helpful to know all the side effects that could happen, because many of them wont, or they wont be severe, or they will and you’ll deal with it then. If you have a buddy who’s been there, you can call her up and say “I feel like …..is that normal?” and get some reassurance. You probably at some point may need to whine a little. That’s totally ok. After a couple of days, it starts to lift, and you get to feel normal until the next one. My buddy told me that a Coca-cola would help me with nausea, and it did. Unfortunately I still associate Coke with comfort, alas!

    Your body may feel strange to you. That’s normal. This is something new. Chemotherapy cured me of my panic attacks. I was experiencing a racy feeling that I knew were the steroids. I knew it was chemically induced, so I didn’t panic. No panic attacks since!

    Please, take all the medications they give you to keep you comfortable. A stressed body does not have the resilience to cope as well as a comfortable, rested body. Stay comfortable!

    Do you have people to take care of you? Do you have help? Do you have plenty of comfort items available to ride out those possibly uncomfortable few days? Show yourself how much you love you, by tending to your needs the way you would your dearest friend or your child.

    Here are my notes on side effects, for my friend on TAC:

    Either the Adriamycin or the Cytoxan is a bladder irritant. Cranberry juice really helps. Have some around!

    I was terrified of the neuropathy that happens with Taxol. I’m a massage therapist and neuropathy was just too horrible to contemplate. I asked my oncologist’s assistance in desperation if there was any way to avoid it, and she told me that L-glutamine in mega-doses was helpful for some people. I found some powder that provided a gram per spoonful, and chugged it in water for 10 grams a day. My neuropathy was minimal, and not lasting. Talk to your doctor about this. I took 10 grams of L-glutamine for the five days around my infusion, and two grams a day for the rest of the time I was on Taxol.

    Get some funny movies, and keep your sense of humor! Laughing is good for you white blood cells. You may even get to cut back on the neulasta shots, as I did.

    Oh yes, don’t forget the Biotene! Magic mouthwash for sensitive mouths, keeps mouth sores at bay. Use liberally.
    Be proactive. At the first sign of any form of discomfort, head it off by taking amazing care of yourself!

    You can ride this wave, sister. Let nothing be more important than your self care, nothing. Side effects are worse with stress. Be good to you and know that you are on my heart. Sending you love this Wednesday.

    Elizabeth

    I wonder sometimes where I’d be today if I hadn’t faced the beast.

    Would I still be as stressed as I was? I don’t believe that everyone has a story like mine, and I do know that some cancers appear randomly, without any precipitating event. And, some of us were a breakdown ready to happen.

    I know that for myself, facing cancer was a major, major catalyst and as I result I changed everything. What was working, I did more of. What wasn’t, I got rid of. Things I loved that I hadn’t been doing became the things I did first.

    This weekend was about writing! I wrote an essay for a contest and sent it off. I had been procrastinating about it, even though I knew I would love to do it. I finally sat down to write and set my timer, telling myself that I would just scribble for 15 minutes and that would get me started. I ended up writing an essay that made me weep, one that I feel very good about. I don’t have any grand delusions that I will win (I’m sure there are 1000′s who sent an essay) but one way or another I’ll publish it! Alas, not now.

    The other deadline I had was a provisional assignment for Yahoo. I applied to be a Featured Contributor. Before I had cancer, I wouldn’t have even applied. I would have just assumed that I didn’t have the expertise or the clout to write about Alternative Medicine, which is the category I applied for.

    The new me said, Hey, what have I got to lose? If this is for me, not doing it is wasting time! I applied and forgot about it.

    Four days later I got a provisional assignment with a four day deadline. Ace the assignment and I’m in. I ace’d it. If you want to take a look, here it is:

    My article on herbs and chemotherapy

    I was delighted with what they asked me to do, right up my alley! I got paid to write. That just rocks.

    My freelance writing career has begun. I don’t know where it will go, and that’s half the fun. After I had cancer I began redesigning my life, making it up as I went along.

    Now I am a massage therapist/teacher/thespian/writer/artist/wife and mom. I really don’t know what to say when people ask,

    “so, what do you do Elizabeth?”

    Oh yeah, and blogger. Thanks for reading!

    And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I was diagnosed, I had been a full time professional Massage Therapist for nearly 20 years. I knew all about complementary therapies, but I had been neglecting myself, badly. I wasn’t just a wounded healer. I had been limping for a long time. I had just emerged from an awful divorce, huge work stress (the hospital where I worked was downsizing, and the pressure was on!), and my children were suffering. They were 7 and 9. I knew something had to give, but I didn’t really know how to get out of the quicksand I was in.

    When I got the diagnosis, I knew I had to fight and fight hard. I decided that I had an opportunity to heal my whole life, and that embracing that task would give me the best chance to survive. I sought healing of body, mind and spirit, and most importantly to mend the rifts between them. The word “congruence” was my operative word, and still is. So, my take on complementary therapies is really an approach rather than just a list of modalities. having said that, I pretty much used them all!

    My practices for myself:
    1. Say “yes” when anyone offered help. Accept with gratitude. Believe that I deserved the help and that giving it was a blessing to the ones who offered.
    2. Put myself first, for the first time ever in my life, no matter who it upset. I was fighting for my life, and I knew it. A total stranger told me to do this, and I believed her.
    3. Actively and deliberately sought my own happiness. It took awhile to figure out what that looked like.
    4. Made a decision to stop beating myself up, period. Nothing was gained by my perfectionism, and I was beating myself down. Now I question my tendency to self blame, and if I find something that needs to change, I take note and move on.

    I had to rely on #1 a lot, because I was not in a financial position to pay for everything I received. Still, I accepted it, and it all helped, more than the sum of it’s parts. Here’s my list:

    1. Massage Therapy. I received a massage once a week while I was receiving chemotherapy. My colleagues at the hospital did this for me voluntarily, on their own time. I will always be deeply grateful for this.

    2. Healing Touch. I received this through a Stanford University study called Healing Partners. I received one session per week for six months.

    3. Acupuncture. My mom offered to pay for this because she knew it would help. I was a struggling single mom when I went on this journey so I did not have the funds to do this. I received acupuncture once every two weeks.

    4. Guided Imagery. I believe this had a huge impact on my treatment. I used it to keep my blood cell counts up, to maximize the effectiveness of my treatments, and for healing after the treatments were over. I’ve already written a short article about that on the pages for Complementary Therapies. Excellent Guided Imagery CD’s and MP3 downloads are available from Health Journeys.

    5. Support: I went to an Art and Imagery support group. This was a combination of Guided Imagery and using art therapeutically. It was very helpful. That program closed at the hospital and I really miss it. I also found my Caringbridge site to be a huge source of support.

    6. Counseling. Fortunately for me, this was available through California Cancer Care where I received my treatments.

    7. Laughter! I didn’t do “laughter therapy” (whatever that is…I haven’t tried Laughter Yoga but I have a friend who’s into it and loves it) but at the time I was diagnosed I had been attending a comedy improv class every week, and I made sure to continue. I timed my chemotherapy so I would be up for my class, and I didn’t miss a single one! Even after my surgery, I couldn’t play, but I could watch. I’m convinced that laughing my head off every week was very good for me.

    8. Exercise is very important! I took advantage of the “Living Strong, Living Well” program at my local YMCA and did weights, cardiovascular exercise, and whatever else seemed like fun. I also did yoga at home, and some chi gong. I had a couple of videos and they worked well for me. I have a chi gong video that offers a 10 minute sequence for cleansing, called simply “chi gong for cleansing”. I am convinced that my complete recovery from surgery with my range of motion intact is because I did yoga.

    9. Nutrition: My doctor told me, “Eat what looks good to you”. I wanted to be a martinet about what I ate, but I had decided to accept all help so I indulged in comfort food when it was offered. What I did do is create a smoothie that covered all the bases, and I had that every day during chemotherapy. Now I’m a bit more careful, but not super strict. I find the information on “Food for Breast Cancer” useful and I read the research they publish.

    10. Cultivate hope, actively. I read everything I could get my hands on about recovering. The book “Remarkable Recovery” was my constant companion. I read the stories over and over, especially if I was feeling worn out by it all. The gist of what I got from it was that beating the odds was about doing it how you do it best, and it’s different for all of us.

    11. Self expression and creativity. Everybody has her own way to do this. I found blogging, and loved it. I also got tons of support online, which was a huge help. I picked up a paint brush for the first time in 20 years or so. As I went through radiation, I was also rehearsing for a musical, again for the first time in 20 years. For you it may not be this sort of stuff, it may be something else, but whatever it is, it makes your spirit hum! If you’ve forgotten what that is, it’s time to discover it again!

    12. Prayer. Whenever anyone offered to pray for me, I said yes, by all means please do! Acknowledging that my life was worth praying for, and allowing total strangers to pray for me (I was on a ton of prayer lists) was an important act of self love. There is research that supports the effectiveness of prayer, and I believe deeply that true self love sets all kinds of positive cellular happenings in motion.

    13. Substitute “Feel Everything” for “stay positive”. I heard that stay positive stuff all the time from well meaning people. Being a Pollyanna does not help. Neither does denial. What does help is honoring what you feel, give it expression, and keep things moving. I didn’t elevate my lousy mood by pretending I didn’t have it. I blogged, “feel like crap, going to bed” and then later absorbed the messages of hope from my friends on my guestbook. I cried my way through a few infusions, and then felt better. After I cried I could make art or settle into my warm bed with some hot chocolate. Everything is allowed!

    There’s my first stab at it ladies, for my dear IBC sisters and anyone else this may help. If you have any questions about what’s here so far, or want me to elaborate some more, please send me an email at elizabethdanu@rocketmail.com. What you tell me you want is what will be in Part Two. In the meantime, I am sleuthing out links and resources.

    I hope this helps!

    Love,
    Elizabeth

    Wednesday, April 18, 2007 12:46 PM, CDT
    Feeling anxious and discouraged today. I guess I get to have a bad day sometimes… could be worse. I’m nervous about the next infusion, and I’m tired of it all. I’ll be getting infused every darned week, and I am not enthused.

    Improv was great last night! Worth saving my energy for. I was lucky to get to go, because the children’s father is out of town and he usually keeps the kids on Improv night. My wonderful neighbors, Becky and James, took over so I could go. Thank you, thank you! Improv is therapy. I’ll keep going even if I just watch! Fortunately last night I played.

    I’ll see Dr. Brown today, and maybe she can ease my fears. I just don’t know how my body is going to react to these chemicals. Once I have it behind me it will not be so bad… Flo says the anticipation is much worse than the real thing. I’m also discouraged because I will still get herceptin every 3 weeks after the rest of chemo is done, until it’s been a year. That’s next April! It seems like such a long time to wait to feel really well.

    There’s my whine for the day. I’m still lucky when I consider the alternative!

    My Aunt Darlene is coming today for a few days. No doubt she’ll cheer me up!

    Love,
    Elizabeth

    ***

    Present time postscript:
    Dr. Brown confirmed at the time of this writing that the cancer was in retreat, which made all the difference. It was timely right now, after how I’ve had a fear recurrence, to be reminded of how well chemotherapy went well for me.

    I wonder, does the fear ever go away for good? I would like it to, because it is unproductive.
    Seeking the formula…

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    I remember those days.

    One day, during chemotherapy, I just couldn’t get comfortable. No matter what position I settled into, sleep eluded me, and wakefulness was no fun. I stumbled out of the bedroom and out into the kitchen where my boyfriend was puttering, and told him I just couldn’t take it! I was sick of it!

    He patiently listened while I told him what was bothering me. He didn’t try to fix it, he didn’t try to make it go away or tell me everything was going to be ok. He just listened. After that, I felt better.

    There were other times as well, many of them. I learned to keep a few tricks up my sleeve for those days. These are the things that kept me going, one weary step after another to the finish line.

    1. Distraction. I had several really good reads stashed. When I was on Taxol, my eyes would be really bad for a few days, and I remember affectionately being out with my dear friend Christy and buying another pair of readers to put on top of my regular specs. It worked! I looked funny, but I could read. Good movies are another welcome distraction. Funny ones are especially good, but whatever I could get lost in was great.

    2. Get support. Good ol’ Flo, my buddy, would get my tearful calls. She would commiserate (been there, had that stuff, yup, it does feel like Drano in your veins, it’ll ease off soon) and her husband Don would call out in the background, “This is TEMPORARY!” My mom was good for that too, although it was hard for her. Some folks weren’t. My significant other at the time would get frustrated that he couldn’t do anything about it. I didn’t call him. I let him do other stuff for me (like make me laugh) but not usually the “I’m so miserable” call.

    3. Nurture your soul. Whatever feeds your heart, deep down, will surprise you with the energy you have for it! I got out my paint brushes for the first time in 20 years. It was wonderful!

    4. Give yourself a pep talk, and let others give you one too. Remind yourself of how far you’ve come. Even if you’ve only done one infusion out of eight, that’s one down and one less to go. Make little black boxes and check them off if it helps. Whatever it takes so you can see progress will keep you motivated.

    5. Read, listen to or watch something really inspiring. I used to keep a copy of “Remarkable Recovery” under my bed, in easy reach. It was full of stories of people who had recovered beyond expectations, in a number of ways from a number of illnesses, including rare and aggressive cancers.

    6. Be taken care of like you would care for your beloved child. Cozy blankets, hot chocolate in bed, whatever makes you feel nurtured, body and mind. Get a gentle massage from someone who is skilled and careful. Have someone who is caring for you make you something delicious.

    7. Make plans for all the great stuff you’re going to do when you finish treatment! Daydream, make lists, whatever puts the future without feeling rotten within reach.

    8. Have someone take you to a beautiful place that restores you, like the beach or a beautiful garden. Or, if you’re well enough, pack a picnic and take yourself!

    9. Give yourself small rewards. I used to go get a Jamba juice after every infusion, if Flo hadn’t already brought me one!

    10. Read all the loving messages you’ve received on cards, on the internet, and anywhere else. Let them remind you how supported you are.

    11. Make your own list, and make it full of choices. Do it while you’re not feeling like you just can’t take it anymore! Include very easy things so there is always something to do that could make it easier to move one more step forward.

    12. Pat yourself on the back often! This journey is not for the faint of heart! You didn’t choose to be on it, but you’re a trooper for staying the course.

    Any more ideas? Send them on!

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    Chemotherapy is a task that can’t be done alone.

    It takes a lot of people, doing a lot of things, to help a loved one cope with cancer treatment and allow her or his body to cope with the treatments and heal. Community is essential.

    I became familiar with Lotsa Helping Hands when a friend of a friend was diagnosed. I did not live very near to her, but I could be in communication, and everyone who was able to help her with all the gazillion things that needed doing had a way to keep it organized.

    If you’re facing cancer treatments and are willing to say “yes” to all the help that people want to give, you might benefit greatly by forming an online community. You don’t even need to be computer savvy. Just the person you put in charge, and I highly recommend that it not be you!

    If you are someone who wants to support a loved one and don’t know how to go about it, once again an online community can be a huge help. The patient lets everyone know what is needed, and the community fills the gaps.

    The benefit of this is not simply logistics. It is also support. My Caringbridge journal provided me with this, and I had Susan Moore Rodgiguez (5th floor charge nurse and resident angel) organizing food delivery, and I was able to organize child taxiing and care.

    It is deeply healing just to see how many people are willing to jump in and help! You wont know unless you ask. If people are given a way to find their helping niche to show their love and care, they are happy to do it.

    Lotsa Helping Hands is a great resource. I’ve included the link here. You can also simply set up a mail list (someone other than the patient in charge!) or, I’ve seen Caringbridge sites used in this way as well.

    Most of all, don’t be afraid to ask for, and receive, all the help that people want to give. It’s good for them, and will make all the difference for you!

    http://www.lotsahelpinghands.com/

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    My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it.

    Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what it is like for a young child. My son, who was nine at the time, went from irascible and boisterous to quiet and well behaved. He acknowledged to me later that he was scared out of his mind. My daughter acted angry all the time, and berated me,

    “Ever since you got cancer all you care about is yourself!” Her little seven year old soul found it easier to believe I was being selfish than to know how sick I was.

    Obviously, I had to take care of myself, or I could not hope to be around to raise them! It was heartbreaking.

    So, how can we support our children when we are coping with cancer treatments and everybody in the neighborhood is caring for them?

    I got my children into therapy, and I am glad that I did. I discovered that my children did not want to burden me with things that bothered them, because they did not want to cause me stress. Their father and I are divorced, and unfortunately, meaning well, he encouraged this. Therapy was a safe place for them.

    A friend of mine sent a book that was also helpful, by two sisters named Abigail and Adrienne Ackerman, called “Our Mom has Cancer”. My daughter read it over and over.

    What I did was hold on to our bedtime ritual no matter what else was going on. I have always been a working mom, so our bedtime was special. Each child had his or her own special songs. My son liked gentle nerve strokes on his back, and “one more shiny minute” (that meant two!). My daughter had different songs, and her own ritual.
    During the long months of treatment, if nothing else I managed the bedtime ceremony. The two times I was too sick to do it were the worst part of the journey.

    Now, three years later, I know they have been affected, but they continue to do well. They still see a therapist every so often. They are accustomed to me taking a rest in the afternoon if I need it. My daughter laughs now about calling me “baldy” during those hard days. Now, at 11, she is very kindhearted. My son is his old irascible self, and he still crawls in for a cuddle in the morning (don’t tell his friends!)

    I think it is important to recognize that maybe we can’t give our children all the support they need while we are engaged in fighting our cancer. There are resources out there. So much of dealing with cancer is saying “yes” to help, whether just for us or for our families.

    The goal is to survive to see our kids grow up. To do that we must take care of ourselves, and that includes accepting help to care for our children, both their little bodies and their precious spirits.

    I had to laugh when I saw this!  I found this on the website, Planet Cancer.  A laugh is good medicine!

    This is an excellent website, focusing on the needs of younger cancer patients in their 20′s and 30′s.  However, this ol’ 49 year old lady can still relate!

    I actually remember my baldheaded days with fondness.  I finished chemotherapy in June of 2007, so the remainder of the summer was spent deliciously bald.  The breeze on my head was very soothing.  I didn’t bother to cover my head at home, and sleeping that way was soooooooo comfortable!  If it hadn’t been for the circumstances surrounding my bald experience, I would have thoroughly enjoyed it.

    I had an especially good time with it during my comedy improv class.  There was always an opportune time to whip off the scarf, hat, or wig!

    I must admit though, it got old when my daughter would get mad at me and call me “Baldy”.  I was also annoyed that the hair on my legs was the last to go and the first to come back.  Not fair!

    Top Ten Reasons Being Bald Rocks

    Posted by courtney • December 14, 2009 • Printer-friendly

    10. Topless tanning.

    9.  No hair in your soup. Or anywhere else, for that matter.

    8.  No haircuts, no shampoo, no styling – can you say low-maintenance?

    7.  No lice. Ewww.

    6.  When on the run from the police, you can hide out in the melon section of the grocery store.

    5. Magic Marker skull tattoos.

    4.  On really hot nights, a cool satin pillowcase is better than sex. Like you’re getting any.

    3.  Low maintenance = more time on your hands = higher blood counts (Yeah, you know what I mean!)

    2.  You can join the Bald Hall of Fame.

    1.  Aerodynamics, baby!

    *     *     *     *

    For anyone reading this post who is currently bald, here’s a riddle I made up when I was bald.  I know, my funny bone is peculiar….

    Q:  What is a bad hair day on chemo?

    A:  When you can’t get your eyebrows to match!

    Bald is beautiful!

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    When I look back at the entry I posted yesterday, I am reminded of the amazing way that so many people stepped in to support me as I went through treatment. What’s interesting to me now is that I don’t recall anyone actually asking me what I would like them to do! I was blessed in the extreme. Very seldom did a need pop up that wasn’t met before I even asked.

    What everybody did was perfect. It was not usually what I might have expected, but it was what each person did best and it was always wonderful.

    The Charge Nurse on the 5th floor at Mills (where I had been giving inpatient massage once a week) organized a meal sign up for my family. She put out the call, and many of my co-workers signed up to bring meals. All I had to do was tell her when the infusions were, and when the worse days would usually be.

    Several of my colleagues in the Massage Therapy department took it upon themselves to see that I got a massage every week while I went through chemotherapy. One of the therapists chose to make soup instead. Every Friday she came over with fresh, delicious soup and a little visit to cheer me up.

    My friend Becky, who went to comedy improv class with me, heard the news of my diagnosis and announced, “give me your address. I am going to send you a wonderful healing card”. And she did. Again, and again, and again, pretty much once a week. These were not just cards. They were wild, wacky, exuberant, sometimes soft, always beautiful amazing works of art. Even the envelope would make me smile.

    My boyfriend, Steve, would call me every day on his commutes, and make me laugh. He also helped me get through it knowing I was still a beautiful woman. On rotten weekends he would take care of me, and on good weekends, our four kids and the two of us did normal things. That was all so important. He stayed with me for most of the journey, and we parted friends.

    My mom, who was far away in Seattle, surfed the net for information and hope, and passed all the good stuff to me and kept the scary stuff to herself. Poor mom. That was a heavy burden, and she bore it without complaint, or even letting me know there was anything but the good stuff.

    Other parents took my kids to school. Flo, my #1 sidekick and all around support person, recruited her husband Don and they took the children out regularly, and helped me get them to bed. When I would call Flo up and complain of how miserable I felt (she knew about it, she’d been there) Don would call out in the background, “remember to tell her it’s TEMP-O-RA-RY!” and I would sigh and take heart.

    Several dear friends and family members flew down from Seattle, or ventured across the bay, to stay and take care of me during the yucky chemo days. Susan (I’ve known her since 6th grade. The kids call her Auntie Pickle), Christie, my mom, my sister, Holle, Aunt Ding Ding (Darlene, Ding Ding since we were babies), my sister in law Andrea, they all took their turn.

    Terry took me to Filloli gardens once lovely spring day. It was perfect.

    My brother set up a Netflix account so I could watch funny movies. The night after my surgery, my mom and my sister howled as we watched “the 40 year old Virgin”. Mom hired me a cleaning lady at the very beginning, and kept her until I was strong again.

    My friend Melissa made me the most wonderful collection of delightful, wacky hats that I had the audacity to wear frequently. They always brought a grin when I went to the infusion center with one of those on my head!

    So many people watched my Caringbridge journals, and left wonderful messages in my guest book. I would go and read them when I felt really rotten.

    If someone you know is facing cancer, don’t stress about what you can do to help. Do what you love to do, do what feels natural. You will certainly be a blessing.

    Looking back, I am again amazed and in awe of my army of angels.

    Saturday, April 14, 2007 11:45 AM, CDT
    Four down and four to go, and I am so grateful that this one has not been so bad. Had a great night’s sleep, lots of peace and quiet, kids are having a great time in Seattle so no worries.

    The last two infusions left me so weak by Saturday that I couldn’t even drive myself anywhere. Not having so much growth hormone in the shot has made such a difference. Today I’ve already been out, and will go drive myself to Steve’s later this afternoon. Hooray, day 4 and I can enjoy myself!

    Got a wonderful care package from Becky the Unquenchable, with the usual absurdity all over the outside of the package. Wonderful stuff. I luxuriated in the bath and the shower last night and this morning, with all that wonderful just the right kind of soothing smelly stuff.

    I am also so enjoying my guest book entries. Amazing to hear from people I haven’t met, offering encouragement and hope. Lots of survivors out there! Thanks Diane, you’re as regular as clockwork, and Flo, you’re like warm sunshine on my back on a summer afternoon.

    Isn’t the rain lovely? I feel the soil soaking it up and nourishing my plants, just as all the love and prayers nourish me. I am soaking it all up, and thriving.

    Love,
    Elizabeth

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